The Health Design Podcast: Recent Episodes
Moyez Jiwa
The Health Design Podcast brought to you by the Journal of Health Design(www.journalofhealthdesign.com). Features interviews with the world's leading health design experts including clinicians, designers, patients, authors and researchers. Better health by design.
When Doctors Become Caregivers: Supporting Carers, Community Health, and the Limits of Quick FixesOn the Health Design Podcast, Moyez Jiwa speaks with physician Tyson Garfield about how his perspective on patient experience shifted after his partner was diagnosed with a mucinous borderline ovarian tumor, underwent radical surgery, and faced a prolonged recovery that felt fractured despite good surgical care. Tyson describes the emotional labor, uncertainty before pathology, and using the AI tool OpenEvidence, as well as the need for caregiver support through primary care access and “the village,” noting the healthcare system funds individuals but not unpaid carers. They discuss rural and urban aging challenges including transport dependence, food deserts, limited internet, clinician retention, and fragmented community ties, and highlight community-focused care models like PACE and the importance of social workers. They also debate rising demand for semaglutides/GLP-1s, concerns about long-term effects such as sarcopenia, and the need for clinicians to be more vocal advocates for healthy aging and evidence-based information.00:00 Welcome Back Tyson00:39 Partner Diagnosis Shock03:55 Recovery Gaps Exposed05:09 Emotional Labor Uncertainty09:13 Caregiver Needs Support10:51 Supporting the Carers12:04 Why Village Unfunded15:14 Rural Aging Tasmania19:48 Building Rural Care Models22:09 Keeping Doctors Rural26:28 Urban Isolation Caregivers30:33 Sharing Info Legal Risks32:56 Ethics What Matters Most34:51 Social Drivers Physician Role37:46 Food Deserts GLP1 Debate42:13 Advocacy Against Quick Fixes45:06 Closing Thanks Farewell
Jill Wener, MD is a board-certified Internist, ICF-certified professional coach, certified EFT/tapping practitioner and trainer, anti-racism educator, DEI consultant, trauma specialist, allyship coach, and expert in physician wellness. Jill is passionate about helping people take responsibility for their problems and teaching them practical, easy, rewarding, and trauma-informed tools to take self-improvement to the next level. Jill is the co-creator of the CME-accredited Conscious Anti-Racism training programs, the host of the Conscious Anti-Racism podcast, and the co-author of the best-selling Conscious Anti-Racism book. She has created CME-accredited EFT/tapping and meditation courses. Jill has worked with clients such as Georgia Aquarium, Dana Farber Cancer Institute, Yale University, the Accreditation Council for Graduate Medical Education, Seattle Children’s Hospital, Centene, Santa Clara Medical Society, Rush University Medical Center, ChenMed, the Pittsburgh Business Group on Health, Emory University, Atkins Global, and the National Alliance for Healthcare Purchaser Coalitions.
Dr. Lattisha Bilbrew is a board-certified Orthopaedic Surgeon specializing in Hand and Upper Extremity Surgery and the first Black woman to become a partner at Resurgens Orthopaedics—Georgia’s largest orthopedic practice. She is one of fewer than five practicing Black female orthopaedic surgeons in the entire state, breaking barriers in a field where fewer than 2% of surgeons are women of color. Born in Birmingham, England to Jamaican parents, Dr. Bilbrew’s story is one of resilience, faith, and purpose. Dr. Bilbrew’s research interests include diversity and inclusion within orthopaedic surgery. Her work on racial disparities in the treatment and evaluation of carpal tunnel syndrome has been published in peer-reviewed medical literature. An advocate for health equity, Dr. Bilbrew travels annually to Washington, D.C., representing the AAOS before members of Congress on issues such as Medicare reform, prior authorization, and physician-owned hospital access. Her leadership and influence have earned her numerous honors, including recognition in The Atlantan Magazine as one of Atlanta’s Top Orthopaedic Surgeons, Georgia Trend’s “Top 40 Under 40,” and Modern Luxury’s “Most Powerful Women of Atlanta” and “Influential Atlantans in Medicine.”Episode Description:Dr. Bilbrew shares her powerful journey into medicine, inspired by a personal family experience that shaped her mission to lead with empathy and compassion. As one of the few Black women in orthopedic surgery, she reflects on embracing identity, breaking barriers, and navigating bias with pride in her Jamaican heritage. She discusses how individual empathy and systemic advocacy work hand-in-hand to advance health equity, from patient-level connection to policy-level change. Dr. Bilbrew also highlights the importance of mentorship, community engagement, and preparing future clinicians to serve with purpose, integrity, and understanding.Dr. Bilbrew is the author of the #1 Amazon bestseller, Yes, I Am The Surgeon: Lessons on Perseverance in a World That Tells You No, a compelling memoir of resilience, representation, and faith. Her forthcoming book, Measure Twice, Cut Once: Lessons on Confidence in a World That Tells You No, explores the power of preparation, purpose, and self-trust in overcoming adversity.
Simply Estate Services exists to take executors from overwhelmed to fully supported, and our work reflects the lived experience behind that mission. April grew up navigating three contested grandparents estates, and those years shaped the foundation of what we do today. Executors often inherit responsibility without guidance, and the weight of decisions, timelines, and family dynamics can stop progress for months. We step in as the end to end partner who keeps momentum steady, clarifies every next step, and manages the entire process of preparing a property for market.We specialize in working with lawyers, notaries, real estate agents, and executors, and our role goes far beyond clearing contents. We organize belongings, coordinate repairs or maintenance, manage redistribution of items, oversee trades, and handle every detail required to bring a home to sale readiness. Our focus is on realistic value rather than imagined value, on clarity rather than assumption, and on ensuring the executor remains in control while no part of the workload falls on their shoulders.Executors trust us because we reduce emotional strain, shorten timelines, and provide a single point of coordination that keeps estates moving forward with confidence. Our work has become a vital support system for families and legal teams, and we are proud to bring order, compassion, and professionalism to a process that is often confusing and isolating.Linkedin: https://www.linkedin.com/in/jonathan-fluevog-jr-761aa23/Website: www.fluevogfilms.com
In this episode, Dr Michelle Ossmann, nurse practitioner and socio-spatial scientist, explores hospitality in healthcare, ICU design, and evidence-based healthcare architecture. Dr. Ossmann is the global research director for MillerKnoll. Trained as a socio-spatial scientist and nurse practitioner, she leads the research team to investigate front-end innovation and back-end organizational outcomes across a range of place types. She serves in an advisory capacity for various Fortune 500 companies, health systems, and academic and professional programs, and publishes and presents widely. Dr. Ossmann received both her undergraduate and graduate degrees in nursing and her MBA from Emory University, and her PhD in Architecture from The Georgia Institute of Technology.For more information on research discussed on today’s podcast, visit millerknoll.com. You can also connect with Dr. Ossmann on LinkedIn at https://www.linkedin.com/in/michelle-ossmann/, where she shares additional research and insights.
Social Change, and is a professional member of AIA, NCARB, the Society for College and University Planning (SCUP), and the Society for Simulation in Healthcare (SSH).For your show notes, here is a recent article I wrote about medical school design on SLAM's blog:https://slamcoll.com/blog/wellness-focused-medical-school-design/
Perry Ashenfelter is a licensed architect passionate about creating healthier environments that bridge the relationship between architectural design, sustainability, and the urban experience. Her professional work spans a large range of scales from residential to higher education and healthcare, as well as large scale urban resilience projects. Perry has a diverse background with extensive construction management experience and technical training from her studies in structural engineering. She values the importance of considering all perspectives in developing comprehensive and creative solutions in a collaborative manner with project teams. Perry’s academic pursuits have focused on how design, as a tool, enables adaptation and encourages new approaches for sustainability from the building scale to the public realm. She is enthusiastic about increasing carbon literacy and reducing the carbon footprints associated with the built environment. Most recently, Perry's health care work has included the renovation and expansion of a world class veterinary medical center facility to match the level of care and expertise they provide to their patient community. While the patients receiving care and treatment may appear to have drastically different needs from their human counterparts, designing for the needs of the most vulnerable whether a patient or family member, and designing for the well-being of the care givers inhabiting these spaces supports the vitality of our overall healthcare infrastructure.
sales where she led the launch of a multi-billion dollar new business development program, ran the analytics function at a small startup, and built HR analytics and survey infrastructure from the ground up for a fast growing company. She studied Adverse Work Experiences, adapted from Adverse Childhood Experiences, in her doctoral program in Industrial Organizational Psychology and is passionate about creating more humane workplaces.
Dr. Chelsea Turgeon is a business mentor and founder of The Spiritually Ambitious Entrepreneur podcast and community. She left OBGYN residency in 2019 and built a six-figure coaching business from cafés around the world. If you want to build a business that feels like you, changes lives, and funds your freedom, subscribe to The Spiritually Ambitious Substack.
Eric is a strategist focused on designing experiences people genuinely desire. Over nearly 20 years, he’s worked across hospitality, transportation, and member-based communities—domains where brand, environment, and service design meet. His portfolio includes global experience strategy for Hilton’s luxury brands, premium mobility design at Uber, and the member experience vision for NeueHouse. That same foundation has made Eric a trusted partner in health and well-being, where the stakes are high and the details matter. At Cactus, he leads strategy for a high-touch longevity startup in the Middle East and has helped reimagine care delivery and environment design for Canyon Ranch, Mayo Clinic, and more. An anthropologist by training, Eric blends cultural insight with business logic and spatial storytelling. He works closely with CEOs, product leaders, and architects to shape offerings from the ground up.In this episode of the Podcast, brand strategist Eric Matis explores how lessons from consumer brands can transform healthcare experiences. Drawing on his years at Red Scout, Cactus and his multidisciplinary background, Matis discusses brand strategy as the art of finding focus through intention and how those principles apply to patient empowerment, service design, and cultural change in healthcare. Hear how healthcare can move beyond compliance toward engagement, respect, and desirability—from oncology clinics to digital health tools.
through the power of community and AI. R3ciprocity aims to allow researchers to create nearly non-rejectable research papers and grants, and have fun too! Through R3ciprocity, I also engage with a global audience of researchers and practitioners, sharing insights and hope to millions of people on research, innovation, and strategy.I dabbled and failed to publish research in many contexts including editors, prospective entrepreneurs, medical technology, Formula 1 Racing, software development, content creators, and automobile recalls. Occasionally, it has gotten through. He has taught undergraduate, MBA, and doctoral courses on Strategy, Organizational Theory, Research Methods, and Innovation and Entrepreneurship. He is currently on the Editorial Board of Academy of Management Review, Organization Science, Strategic Organization, serves as the Secretary of the Strategy Division in the Academy of Management. He has published in such outlets as Harvard Business Review, Journal of Management, Journal of World Business, Management Science, Organization Science, and Strategic Management Journal. He has a PhD in Strategy from the Ivey School of Business (Western University), and degrees in Chemical Engineering, Management Science, and Sociology from the University of Waterloo. He held non-academic positions in scientific programming and public policy. He (co)founded the Ivey Medical Technology Innovation conference, CSOL, and R3ciprocity. The Carnegie School of Organizational Learning (CSOL) is the preeminent conference on decision-making and learning within and between organizations.Podcast: https://open.spotify.com/show/3886vB9hdqnmHkOZRFlyih?si=554c3eb0b6bd4a39 YouTube: https://youtube.com/c/r3ciprocityTeam Platform: https://www.r3ciprocity.com
Peter Quarry studied psychology at Melbourne University in the mid-1970s. He workedinitially as a counsellor of the unemployed, then pivoted to public speaking, workshopfacilitation and content creation.In the 1980s, he co-founded Ash Quarry Productions and became the on-screen expertpresenter of corporate training videos that, over the next two decades, gained globalrecognition. His work was translated into multiple languages and won dozens ofinternational awards.By the early 1990s, Peter was invited to appear on ‘Good Morning Australia’, where hesecured a regular slot as the sometimes fun, sometimes serious, ‘Resident Psychologist’,answering viewers’ letters.In 2021, his debut book, If I Were You – A psychologist puts himself on the couch, waspublished. He is a regular contributor of psychology-related articles for major Australiannewspapers, including the Sydney Morning Herald and the Australian Financial Review.He is currently writing a new book exploring death anxiety - and how to overcome it.peterquarry.com
Laura Nelson is the co-founder of Sober Life Rocks and author of The Inclusive Event Planner. With a strong background in leadership and events, she champions sober-inclusive gatherings that foster real connection. Her work is inspired by her own sobriety journey and a mission to help professionals design meaningful, welcoming experiences for all. She is also excited about their first conference, Amplify, a sober-focused event amplifying sober voices, on January 15, 2026. Join her in the Sober Life Rocks Community on LinkedIn and grab a free copy of her book at SoberLifeRocks.com.See also:•Amplify Sober Voices – their first conference dedicated to amplifying sober voices, happening January 15, 2026, in Orlando. You can find more here: amplify.soberliferocks.com.•The Inclusive Event Planner – her book on creating sober-inclusive, connection-driven gatherings. Details are here: inclusiveeventplanner.com.
utm_medium=ios_appEmail: brandi@brandimac.comWebsite: https://www.brandimac.com/Podcast: Do what you can live with
Dr John Malios is an experienced general practitioner and medico-legal examiner, retiring after a 50-year career in general practice. He founded the Oakleigh and District Health Centre (now The General Practitioner) in 1972 and went on to serve as Convenor of Medical Panels Victoria (2012–2017) and Deputy Convenor (2007–2012).He continues to contribute as a Presiding Member on Medical Panel Tribunals and has extensive expertise in medico-legal impairment assessment under the AMA Guides for WorkSafe and Wrongs Act claims. Dr Malios also delivers training for the Personal Injury Education Foundation (PIEF).Currently, he is an occupational health consultant in private industry, Medical Advisor and committee member of Thalassaemia and Sickle Cell Australia, a member of the consumer advocacy group for Primary Aldosteronism, and an Associate Investigator with the Hudson Institute’s Primary Aldosteronism Centre of Excellence (PACE).Dr Malios is a Life Member of the AMA and RACGP, and a member of the Australian College of Legal Medicine.
Parker LaCombe is a passionate advocate, strategist, and internationally recognized subject matter expert in mental health, peer support, and systems transformation. As the co-founder of MindCareConnect and firm believer that recovery is possible for all who navigate mental health and substance use challenges, Parker uses her lived experience to bridge the gap between clinical and peer perspectives—co-creating more inclusive, trauma-informed, and human-centered systems of care. Her contributions have been recognized nationally and internationally, earning her the 2024 STAR Peer Support Worker of the Year Award from SAMHSA and recognition as a Rising Star in the 2018 National Lifesavers newsletter by the American Foundation for Suicide Prevention. Parker continues to champion stigma reduction, workforce equity, and peer leadership in mental health and suicide prevention efforts across the globe.Sydney Harris is an international mental health strategist with over 15 years of experience across public and private sectors, dedicated to transforming care into models that are person-centered, accessible, and holistic. She has led major initiatives including the Austin State Hospital Redesign and cross-sector collaborations addressing the intersections of mental health crises, homelessness, and the justice system. Sydney is the co-editor of Redesigning the U.S. Mental Health Care System (Oxford University Press), contributing two chapters to the volume, and the recipient of the prestigious George Pressler Under 40 Award recognizing leadership and vision in healthcare planning, design, construction, and operations. She is the co-founder of MindCareConnect, which elevates lived experience to shape mental health policy and innovation, and is currently pursuing a Doctorate in Public Health at Johns Hopkins University.MindCareConnect Website: https://www.mindcareconnect.org/
Terry Tucker is a speaker, author, and podcast guest on the topics of mindset, motivation, and self-development. He is the Founder of Motivational Check LLC. Terry has a Bachelor of Science degree in Business Administration from The Citadel and a Master’s degree from Boston University. Among his many diverse roles, he has been a college basketball player, a marketing executive, a hospital administrator, a SWAT Hostage Negotiator, a business owner, and for the past 13 years, a cancer warrior.He is the author of the book Sustainable Excellence, Ten Principles To Leading Your Uncommon and Extraordinary Life, and a featured author in the book Perspectives On Cancer, Stories of Healing, Hope, And Resilience. Terry has also been published in Authority, Thrive Global, and Human Capital Leadership magazines, along with being quoted and highlighted in the books Your Blueprint for Purpose by John Creekmur and Audaciousness, Your Journey To Living A Bold And Authentic Life by Maribel Ortega and Helen Strong.
Stephen Garner is a patient researching their own disease, exploringthe frontiers of human knowledge, and developing new frameworks as anethical theorist. After reducing the severity and frequency of his ownautoimmune symptoms through targeted nutrition, biochemical modeling,and self-experimentation, Stephen now shares his experience, andfindings, to help others better understand and manage chronic illness.With a background in emergency services, information technology, andscientific theory-building, he brings a systems-oriented lens to theintersection of health, ethics, and personal agency. His current workfocuses on giving the body the tools it needs to maintain systemscoherence; combining insights from microbiome science, immuneregulation, and cognitive framing.
DR ALASTAIR SANTHOUSE is a consultant neuropsychiatrist working at the Maudsley Hospital in London. He began his medical career working in internal medicine before retraining to become a psychiatrist. He is a fellow of both the Royal College of Physicians and the Royal College of Psychiatrists, and formerly served as president of the Psychiatry Section of The Royal Society of Medicine, as well as vice chair of the liaison psychiatry faculty at The Royal College of Psychiatrists. He is the author of 2 books, most recently No More Normal: Mental Health in an Age Over-Diagnosis. His first book was Head First: A Psychiatrist’s Stories of Mind and Body
Dr. Gary Sprouse is a retired primary care physician who practiced in Maryland for 38 years. He graduated from George Washington University Medical School in the top 10% of his class and is a member of Mensa. He is committed to helping people improve their mental health. He has taken everything he has learned about stress reduction and crafted his award-winning book, Highway to Your Happy Place: A Roadmap to Less Stress. Reading just one chapter can change your life!Best-selling author and motivational speaker Jack Canfield reviewed the book and said: “In the span of getting to know Dr. Gary Sprouse and reading his book, I have been introduced to many new concepts and ideas. His ideas and models for stress reduction are life-changing. You will absolutely love this. A must-read.”Dr. Sprouse is extremely passionate about bringing happiness into people’s lives through humor, compassion, and understanding. He has a unique perspective on stress that no one else is talking about. He has uncovered a groundbreaking new way to define where the majority of human stress originates. This new insight and the tools he developed to deal with stress are changing lives.Dr. Sprouse also collaborated on a book with Jack Canfield. The new book, Mindset Matters, is a best-seller on Amazon and Barnes & Noble.Website: https://www.thelessstressdoc.com/Facebook: www.facebook.com/lessstressdocInstagram: https://www.instagram.com/lessstressdocLinkedIn: https://www.linkedin.com/company/the-less-stress-docHappiness Highway Podcast: https://www.youtube.com/@HappinessHighway-vk3xu
Kimberly Warner is a filmmaker, author, and patient advocate whose work explores what it means to live fully in a body that doesn’t always feel well. After studying pre-med and biology at Colorado College and pursuing graduate training in naturopathic and classical Chinese medicine, she veered from a clinical path toward a creative one, trading diagnostics for documentary and turning questions of health into stories of meaning.After developing a rare neurological disorder in 2015, Kimberly turned her artistic focus inward, embracing stillness, intimacy, and relationship as the foundation of her work. In 2019, she launched Unfixed, a media project that now includes award-winning films, limited series, podcasts, memoirs, and live roundtables. Her work has been recognized by PBS, Harvard Medical School, and the Invisible Disabilities Association, among others.Kimberly leads a larger advocacy role within the chronic illness community where she writes and speaks about her own patient experience. She is a member of the Global Advocacy Alliance, the PPAA (Patient and Physician Advocacy Alliance,) is a visiting faculty member with Global Genes, helped create a Course for Clinical Confidence—a medical school certificate course, is on the editorial board of the Journal of Health Design and is an ambassador for VeDA. She is also Life on the Level’s Best International Contribution Award, Rainbow Advocacy’s Most Innovative Storytelling Award, and the recipient of the Invisible Disabilities Association’s Media Impact Award. Her forthcoming memoir, Unfixed: A Memoir of Family, Mystery, and the Currents That Carry You Home, will be published by Empress Editions in October 2025.She lives in rural Oregon with her husband, David, where they tend their small farm between creative projects. When she’s not editing films, harvesting calendula, or writing for her beloved Substack audience, she’s practicing what she preaches: loosening her grip, staying curious, and letting uncertainty become a place of peace.Links: Preorder memoir: https://a.co/d/185zEosMain website: https://unfixedmedia.com/Substack (for essays and interviews): https://unfixed.substack.com/Tax deductible donations: https://www.flipcause.com/secure/cause_pdetails/MTIyMDgx 2025-26 projects Unbound (short film): https://unfixedmedia.com/unbound Unsung (short film): https://unfixedmedia.com/unfixed-unsung Liberation of Being (patient memoir): https://unfixedmedia.com/liberationofbeing Unfixed: What Time Makes of Us (feature film, focusing on 6 members of the original cast of the Unfixed docuseries)
Dr. Tyson Garfield is a geriatrician, educator, and health communicator dedicated to helping people live healthier, more financially empowered lives as they age. He is currently an Assistant Professor of Geriatric Medicine and the Associate Program Director of the Geriatric Fellowship at the University of Colorado Anschutz Medical Campus, where he provides primary care for older adults and leads educational initiatives in geriatrics across all levels of medical training.He is the founder of TheMedicineCheck.com, a digital platform and blog that helps adults navigate healthy aging through practical, evidence-based insights. Drawing on his clinical experience and public health interests, Dr. Garfield shares guidance on topics ranging from medication safety and lifestyle changes to navigating complex care transitions.In addition to his clinical and academic roles, Dr. Garfield is a Certified Financial Education Instructor (CFEI) and an advisory council member for the National Financial Educators Council. He is a passionate advocate for improving financial literacy among medical students. He designs and delivers workshops that help trainees make informed decisions about student loans, budgeting, and long-term financial planning—skills that are often overlooked in traditional medical curricula.Dr. Garfield’s work sits at the intersection of healthcare, education, and human-centered design. Through writing, teaching, and advocacy, he strives to make healthcare more understandable and life planning more intentional for patients, students, and professionals alike.
Gina Chang, AIA, EDAC, is a Principal at CO Architects, based in Los Angeles. A healthcare architect and medical planner who has successfully led large teams through ambitious project goals for more than 20 years, Gina believes that a deep understanding of the client’s mission and culture is the key for successful healthcare facilities. She is an advocate for evidence-based design and biophilic design, and sees each project as an opportunity to create a unique environment for healing and wellness. Gina joined CO Architects in 2007 as a medical planner and project coordinator for the Palomar Medical Center project. She holds a Bachelor of Arts in Architecture from the University of California, Berkeley, and is EDAC certified.https://coarchitects.com/https://www.linkedin.com/company/co-architects/https://www.instagram.com/coarchitects/https://www.facebook.com/COArchitectshttps://x.com/COArchitectsLA
Dr. Michelle May is a former family physician and a recovered yo-yo dieter. Like many people in our current food-abundant, diet-obsessed culture, Michelle struggled with disordered eating and body image. From middle school to medical school, her unhealthy relationship with food was her secret, but in her medical practice, she discovered she wasn’t alone! Many of her patients were trying one diet after another, not realizing that restriction drives cravings and bingeing. It’s a frustrating process she calls the “eat-repent-repeat cycle.” After healing her own relationship with food, she founded Am I Hungry? Mindful Eating Programs and Training (https://amihungry.com/). Over 800 wellness professionals have been trained to offer Am I Hungry? mindful eating programs worldwide. She’s the award-winning author of the Eat What You Love, Love What You Eat book series that teaches mindful eating to help individuals resolve mindless and emotional eating and senseless yo-yo dieting to live the vibrant life they crave. (Download chapter 1: https://amihungry.com/chapter1 She’s an Associate Professor at Arizona State University where she teaches Mindful Eating. She also taught a masterclass for the Calm app. She co-authored a peer-reviewed paper on weight-inclusive care (https://doi.org/10.1002/ncp.10885). Website: https://amihungry.comDownload chapter 1 of Eat What You Love, Love What You Eat: https://amihungry.com/chapter1Facebook: http://www.facebook.com/AmIHungryLinkedIn: http://www.linkedin.com/in/amihungryInstagram: https://www.instagram.com/MichelleMayMD I’ll look forward to hearing more about the event on 4/24. Eat Mindfully, Live Vibrantly!.Michelle Michelle May, M.D., CSP*480 704-7811 ext. 101mmay@amihungry.com www.AmIHungry.comwww.MichelleMayMD.com Founder of Am I Hungry? Mindful Eating Programs and Training, and author of:Eat What You Love, Love What You Eat: A Mindful Eating Program to Break Your Eat-Repent-Repeat CycleEat What You Love, Love What You Eat with DiabetesEat What You Love, Love What You Eat for Binge EatingEat What You Love, Love What You Eat for Students Facebook: http://www.facebook.com/AmIHungryInstagram: www.instagram.com/michellemaymdLinkedIn: http://www.linkedin.com/in/amihungryYouTube: http://www.youtube.com/c/MichelleMayMDPress Room: http://amihungry.com/press-room/Pinterest: http://pinterest.com/amihungry/
Dr. Gary Sprouse is a retired primary care physician who practiced in Maryland for 38 years. He graduated from George Washington University Medical School in the top 10% of his class and is a member of Mensa. He is committed to helping people improve their mental health. He has taken everything he has learned about stress reduction and crafted his award-winning book, Highway to Your Happy Place: A Roadmap to Less Stress. Reading just one chapter can change your life!Best-selling author and motivational speaker Jack Canfield reviewed the book and said: “In the span of getting to know Dr. Gary Sprouse and reading his book, I have been introduced to many new concepts and ideas. His ideas and models for stress reduction are life-changing. You will absolutely love this. A must-read.”Dr. Sprouse is extremely passionate about bringing happiness into people’s lives through humor, compassion, and understanding. He has a unique perspective on stress that no one else is talking about. He has uncovered a groundbreaking new way to define where the majority of human stress originates. This new insight and the tools he developed to deal with stress are changing lives.Dr. Sprouse also collaborated on a book with Jack Canfield. The new book, Mindset Matters, is a best-seller on Amazon and Barnes & Noble.Website: https://www.thelessstressdoc.com/Facebook: www.facebook.com/lessstressdocInstagram: https://www.instagram.com/lessstressdocLinkedIn: https://www.linkedin.com/company/the-less-stress-docHappiness Highway Podcast: https://www.youtube.com/@HappinessHighway-vk3xu
Mark Steven Porro, a New Jersey native (Exit 163), earned an Industrial Design degree from The Ohio State University. After years of agency work, his love of acting led him to Hollywood, where he appeared in dozens of television, film, and stage productions. Mark also spent his twenty-eight years in Tinseltown, entrepreneuring. He started five non-profit companies. But hold the applause, none were intended to be. He now lives in the South of France. But hold your pity. He of sound mind and body chose to suffer in the heart of wine country where the locals insist his French isn’t so bad—at least that’s what he thinks they’re saying. Mark is an award-winning designer, writer, director, and now a best-selling, award-winning author. He has written lots of jokes, several screenplays, and one award-winning short film. A Cup of Tea on the Commode—a sad, sweet, and funny debut memoir—chronicles his multitasking adventures of filling his mother’s last years with love, laughter, and joy. Though not always successful, he came pretty damn close.2024 Best Indie Book Award Winner2024 NYC Big Book Award Winner2024 Paris Book Festival Winner2024 Living Now Book Awards Winner2024 International Book Awards Winner2024 IndieReader Discovery Award Winner2024 Book Excellence Award Winner2024 Firebird Book Award Winner2024 Eric Hoffer Book Award Finalist2024 Readers’ Favorite International Book Awards Finalist2024 National Indie Excellence Awards Finalist2024 American BookFest Awards Finalist“This author weaves his stories together, employing a wickedly humorous skill not unlike that of David Sedaris and Augusten Burroughs” — Five-Star Amazon review
An unexpected breast cancer diagnosis at 33 years old empowered Jessica Baladad to channel her experience into a mission that’s changing the way women advocate for their medical care.The six-year cancer survivor created Feel For Your Life, a free mobile app that shows women how to perform self exams, track their progress and set monthly reminders. It’s the first of its kind created by a breast cancer patient and has been downloaded tens of thousands of times all over the world. In 2024, Jessica implemented an AI feature into the app to help patients interpret and better understand pathology reports from their breast cancer screenings.Jessica’s history with breast cancer catalyzed her dedication to build Feel For Your Life. She’s the fourth generation on her paternal side of the family to be diagnosed with the disease, and yet, no known gene mutation has been found in her lineage. She first learned how to do a self breast exam after having a benign tumor removed at 18, and nearly 15 years later, Jessica was diagnosed with Stage 2B invasive ductal carcinoma after performing a routine self exam in the shower. She underwent 16 rounds of chemotherapy, a double mastectomy, 24 rounds of radiation, a hysterectomy and 10-hour flap reconstruction.Since launching the app, Jessica has expanded her advocacy into healthcare reform. She’s helped write legislation in the State of Tennessee to promote risk reducing measures against cancer and disease. Billed as the Feel For Your Life Act, it requires high school students to learn about self breast exams, testicular exams and skin exams.Jessica has been featured on Good Morning America, Tank’s Good News, USA Today, Yahoo News, UpWorthy and several national and international media outlets. She’s worked with the NFL on their Crucial Catch Campaign to promote cancer screenings, received the Hometown Hero Award from Ponce Law on Nashville’s Fox 17, has been recognized by the National Breast Cancer Foundation for her leadership initiatives and was the recipient of the Mona Lisa Foundation Grant in 2023.When Jessica isn’t working on patient advocacy, she enjoys traveling and exploring new places, attending sporting events with her husband and photographing animals.
Peter is of Greek descent and shows resilience and strength in facing the challenges of living with Beta Thalassaemia. Peter is passionate about supporting and advocating for others who share his condition.As an Early Childhood teacher, Peter uses his knowledge and personal experiences to assist families navigating the complexities of the health system and accessing vital services. He is a dedicated advocate for patients and the community, providing guidance and support to those in need.Peter enjoys participating in awareness days to educate the community around what it’s like living with thalassaemia and to increase awareness of genetic blood conditions.Peter serves as a consumer advisor for the Monash Health Blood Committee, helping to shape policies and initiatives that benefit individuals with blood conditions.Despite some health challenges he faces just like many others living with the condition, Peter remains positive and dedicated to making a difference in the lives of those around him.Sally is an enthusiastic Health Promotions Officer at Thalassaemia and Sickle Cell Australia. She takes great pride in her work as she educates the community about genetic blood conditions, carrier testing and blood donations. She also loves connecting with people, supporting those affected by these conditions. Sally is dedicated to creating a positive impact in the lives of people across Australia.When she's not working, Sally enjoys camping, hiking and being surrounded by nature. She also loves time with family and reading a good book at homePeter Verveniotis, who has been living with thalassemia major for nearly 50 years, and Sally Barton, a health promotions officer at Thalassemia and Sickle Cell Australia. The discussion covers various aspects of thalassemia, including diagnosis, treatment, community attitudes, and future perspectives.Key points include:Peter's experience with regular blood transfusions and the physiological challenges of thalassemia majorThe impact of diagnosis on family dynamics and community stigmaSally's role in educating high school and university students about thalassemiaAdvancements in treatment options, including chelation therapy and potential gene therapyThe importance of coordinated, multidisciplinary care for thalassemia patientsThe role of community support in helping patients feel less isolatedProposals for future initiatives, including an international conference and journal editorialsThe episode provides valuable insights into living with thalassemia and the ongoing efforts to improve care and awareness for this rare genetic condition.
Emily is the Founder and CEO of Attane Health, a digital health company in the “food is medicine” space. Rooted in lived experience, Emily leads a passionate team dedicated to changing health outcomes through harnessing the healing power of food. After experiencing first-hand the challenges of managing chronic health conditions with limited resources, Emily founded Food Equality Initiative (FEI). Under her leadership the nonprofit grew to a 7-figure annual budget, supporting patients' access to healthy food. Emily is a national patient advocate who has provided both oral and written testimony to the FDA and USDA. Active in her community, Emily serves on several hospital committees and food policy coalitions. A member of the 2025 Child and Adult Core Set Annual Review Workgroup, Emily works to advance health equity in all pursuits. Her research interests include food systems, health disparities, and patient-centered approaches to care. Emily is a published co-author of several peer-reviewed articles with top research institutions in allergic disease. Emily believes in the power of patients and data to achieve greater health outcomes.
Thomas Wong, AIAThomas Wong is a Design Partner in Ennead Architects. Thomas has provided insightful design leadership on a broad range of building and program typologies, from museums to academic buildings and inpatient hospitals. The projects he has designed span multiple geographic regions, from Asia and the Middle East to cities across the United States. The diversity of typologies and contexts in which he designs speak to the range of his design approach: Thomas treats each design problem as a unique set of opportunities and issues that lead to a distinct, specific, and authentic solution. His projects have received global recognition and multiple design awards. Thomas received both a Master of Architecture degree and a Bachelor of Architecture from Cornell University College of Architecture, Art and Planning. Louis A. Meilink Jr., FAIA, FACHA, ACHELouis Meilink’s great passion is architecture for health. As long-time leader of Ballinger’s healthcare practice, trusted partner to renowned healthcare institutions, and recognized pioneer in evidence-based design, he specializes in the intersection of design excellence and clinical expertise. Since joining Ballinger in 1987, he has honed a design approach founded on curiosity and guided by inquiry. With those vital sparks as fuel, Lou ensures Ballinger’s teams ask the right questions, address the right problems, and, in that way, reach the right answers. Lou’s work demonstrates that when you meld passion with persistence, you can overcome obstacles, uncover solutions, and unlock the power of design to lead cultural change.
Mahwish Syed is an award winning fashion and interior designer, celebrated author, cancer survivor, and devoted mother. Her creations have adorned bodies and homes for over two decades, fostering spaces that nurture and heal. Featured in distinguished publications like New York Times, Architectural Digest, Elle Décor, and Hamptons Cottages & Gardens, her designs transcend boundaries. Her book "Purgatory to Paradise" unveils her triumphant cancer journey, showcasing how design became her healing sanctuary. Committed to empowering others, she advocates for personal paradises, affirming that genuine beauty is immediate and attainable for all.1.http://www.msd-ny.com/press2.https://elephantsandtea.com/survivorship/you-are-not-alone-and-i-love-you-toohttps://www.digitaljournal.com/pr/news/prodigy-press-wire/mahwish-syed-on-nature-informed-homes-with-meredith-oke-on-quantum-biology-collective-podcast 3.https://www.architecturaldigest.com/story/15-decorators-create-delightful-scenes-inside-the-brooklyn-heights-designer-showcase4.https://www.brownstoner.com/interiors-renovation/interior-design-trends-brooklyn-forties-fever-curves-facets-fringe-velvet-lighting-furniture/ 5.https://twistoutcancer.org/art/mahwishsyedandsherylannnoday/ 6.https://www.heyartifact.com/creations/912XN/
Mary I. O’Connor, MD is founder and Chief Medical Officer of Vori Health, a virtual musculoskeletal company focus on transforming the delivery of patient-centered and value drive care. She is a nationally recognized leader in health equity and Chair of the Board of Directors of Movement is Life, a nonprofit multi-stakeholder coalition committed to addressing musculoskeletal health disparities. Her new book, “Taking Care of You: The Empowered Woman’s Guide to Better Health,” supports women advocating for equitable healthcare. A past Olympian (US Women’s Rowing), she is passionate in her promotion of the power of sports for girls and women.Dr. O’Connor is Professor Emerita of Orthopedics at Mayo Clinic and past Professor of Orthopaedics and Rehabilitation at Yale School of Medicine. She received her MD from Drexel University and completed her residency in orthopedics and fellowship in orthopedic oncology at the Mayo Clinic in Rochester, MN. She practiced at Mayo Clinic in Florida until 2015 during which time she served in many leadership roles: Enterprise-wide Medical Director of the Office of Integrity and Compliance; Chair, Orthopedic Surgery Department (Florida); Medical Director for Development (Florida); and member of the Executive Operations Team (Florida). In 2015, she became the inaugural Director of the Center for Musculoskeletal Care at Yale School of Medicine and Yale New Haven Health. In February 2021, Dr. O’Connor became a founder and Chief Medical Officer at Vori Health to advance her passion for transforming musculoskeletal care.Dr. O’Connor has published extensively on clinical research and innovation in care pathways, hip fracture care, limb salvage for tumor, sex and gender differences in arthritis, and regenerative medicine. At Yale, she led the creation of a multidisciplinary hip fracture program which transformed clinical outcomes and promoted innovation in the care of this vulnerable population. She authors a quarterly column in Clinical Orthopaedics and Related Research entitled, “Equity360: Gender, Race and Ethnicity,” to advance health equity in the orthopedic profession.She has broken numerous gender barriers as the first female member of the Musculoskeletal Tumor Society (MSTS), the International Society of Limb Salvage (ISOLS), the American Association of Hip and Knee Surgeons (AAHKS) and The Knee Society. She is the Past President of the Association of Bone and Joint Surgeon, AAHKS, ISOLS, MSTS and the Ruth Jackson Orthopaedic Society. She is past Chair of the American Academy of Orthopaedic Surgery (AAOS) Diversity Advisory Board and the AAOS Women’s Health Issues Advisory Board, founding member of the AAHKS Women in Arthroplasty Group, past board member of the Perry Foundation, and member of the AAHKS Diversity Advisory Board. She is past member of the Advisory Committee on Research on Women's Health at NIH. Dr. O’Connor has received numerous awards and honors during her training and career, including the 2023 AAOS Diversity Award, 2023 AAHKS Diversity Award, Distinguished Clinician Award at Mayo Clinic, and the Corinne Farrell Award from the International Skeletal Society. She received the Congressional Gold Medal as a 1980 Olympian (Women’s Rowing).Company: https://www.vorihealth.com LinkedIn page: https://www.linkedin.com/in/maryoconnormd/ TEDx: Promoting Health: Your Secret Superpower https://www.ted.com/talks/mary_o_connor_promoting_health_your_secret_superpower Book: https://mcpress.mayoclinic.org/product/taking-care-of-you/https://www.amazon.com/Taking-Care-You-Empowered-Womans/dp/1945564148 Movement is Life (the non-profit focused on health equity): https://www.movementislifecommunity.org
Susannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was recently published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation and she directed the health portfolio at the Pew Research Center’s Internet Project.
Tina M. Baxter, an advanced practice registered nurse and board certified gerontological nurse practitioner based in Anderson, Indiana, has over 20 years of experience as a registered nurse and 16 years as a nurse practitioner. She owns Baxter Professional Services, LLC, specializing in legal nurse consulting, wellness coaching, and healthcare educational resources. Tina hosts a weekly Facebook live program, teaches stress management, and offers virtual classes. She founded The Nurse Shark Academy to mentor nurses in business, and is a certified small business advisor with LegalShield. She's a frequent speaker and contributor to various media outlets. Currently, Tina works at Adult and Child Health focusing on mental health for adults and geriatric patients. She has a Master of Nursing and post-master's certification from the University of Indianapolis, and serves on multiple boards and associations.Social Media Linkshttps://linktr.ee/baxterprofserv
David E. Montgomery is a board-certified cardiologist focusing on preventing heart disease at PREventClinic in Atlanta, where he is the founder and managing partner. Dr. Dave is also a sought-after TV personality, frequently appearing as a medical contributor on CNN/HLN and NewsNation. Dr. Dave was selected by his peers in Atlanta Magazine’s Top Doctors in 2022. Dr. Dave is the host of the web series, The Good Doctor TV, and the podcast, The Health Mastery Café with Dr. Dave. He believes that mass media and social media can play a key role in enhancing people's health everywhere. Weblinks:YouTube: youtube.com/TheHealthMasteryCafePractice website: https://www.preventatl.com
Epiphany Jordan, MPH, CPH, is on a mission to rebrand human touch. From 2013-2020, she provided platonic touch therapy in a ritualized setting with her business, the Austin-based Karuna Sessions. She is also the author of Somebody Hold Me: The Single Person's Guide to Nurturing Human Touch. Somebody Hold Me addresses the touch deficit singles face, and offers multiple solutions. She has appeared on several podcasts discussing human touch, and spoke about solving loneliness with human touch at Austin’s SXSW Interactive Festival in 2019. In 2023, she completed her Master of Public Health with a concentration in Social Marketing from the University of South Florida, and researched rebranding human touch as part of her program. She has been a journalist, a legal assistant, an event planner, a professional tarot reader, an advice columnist, a cigarette girl, and a gig economy serf.http://www.nurturinghumantouch.comTwitter: @karunasessionsIG: somebody_hold_meFB: https://www.facebook.com/karunasessionsatxhttps://www.facebook.com/somebodyholdme/
Lori Abrams has been a consultant for the past year and a half, helping Organizations accomplish representation in their clinical trials. This has been achieved by developing patient and community focused Diversity Strategy Action Plans, incorporating the patient and caregiver’s voice into decision-making, and bringing tangible solutions to the visible and invisible barriers that prevent representative recruitment and retention.Her last role was Vice President of patient advocacy and clinical research diversity at WCG. Abrams and her team worked to ensure that each clinical trial enrolled a diverse group of patients from underserved populations by facilitating culturally appropriate dialogue between patients, care providers, community members and trial stakeholders. The feedback and interactions from these groups garnered significant recommendations for the sponsors, but importantly, empowered diverse community members. The Team also worked with several pharmaceutical companies to develop Diverse Strategy Action Plans both for the Sponsor and the sites.As the Director of Advocacy, Diversity & Patient Engagement in Global Development Operations at Bristol-Myers Squibb (BMS) she has built a Team that developed innovative and unique advocacy approaches that brought BMS clinical trial awareness and accessibility to patients, physicians, and caregivers. The Team also developed many relationships with minority-focused health and community-based organizations, to increase diversity in BMS clinical trial populations. The Team also focused on educating the internal BMS workforce on the barriers, concerns and daily life of patients and caregivers. This was achieved through quarterly “Voice of the Patient” seminars, art shows by patients, patient videos and internal teleconferences where colleagues could ask the Team questions. Lori came to Bristol-Myers Squibb in 1998 as a Sr. Clinical Scientist in the Virology Group. During her first six years she was the Clinical Working Group Lead on both Videx EC and Reyataz. She joined the Drug Development Learning & Collaboration Team in 2003 managing a team of learning professionals. Prior to joining BMS, Lori was both a study coordinator in HIV/AIDS related clinical trials and a patient advocate at the National Institutes of Health and the Henry M. Jackson Foundation for Military Medicine. Lori partnered with many patient advocacy organizations to bring the plight of the military’s HIV program to the public and integration into the HIV/AIDS overall arena. Additionally, she successfully lobbied Congress to gain support for the military’s HIV Program and obtained an increase in funding of 20 million per year. Her work was recognized with a nomination by Congressman Steny Hoyer (House Majority Leader) to be a delegate to the White House Conference of HIV/AIDS, and an award on World AIDS Day by Congresswomen Constance Morella. Lori completed her undergraduate studies at the University of Maryland and received a Graduate Certificate in Organization Development from the NTL Institute for Applied Behavioral Sciences.
Eric Fisher is a Candian certified counsellor with over 13 years experience working in inpatient and outpatient treatment environments. Originally from the US, Eric specializes in helping those with addiction and trauma. He operates his private practice, Recovery Arts Counselling, in Calgary, AB.
Based in Colorado, Risa August is an author, Speaker, Gestalt practitioner and Patient Advocate for rare pituitary diseases. She has been sharing her story for the past five years, and more recently in her memoir The Road Unpaved – Border to Border with a Brain Tumor and a Bike. In addition to speaking at conferences for leaders in pharmaceuticals, medical professionals, and patients, her work is published on blogs and in other smaller publications. Her most popular personal essay, “Marshmallow Clouds,” has been translated into Spanish. Through her personal transformation, Risa has learned and practiced removing limiting beliefs, shifting her perspective, and embracing a full life.Risa has a B.A. in geography, a certification in the Gestalt Coaching Method, and a certificate in mindfulness-based cognitive therapy. She has been living with a pituitary tumor and rare disease for over a decade and offering words of inspiration and information to audiences in hopes of saving others from heading down a bumpier road.A girl with sparkles in her hair and once an Ironman athlete, Risa still has a passion for her bike and barbells. With her genuine curiosity and love for trying new (and old) things, you may find Risa taking Bollywood or hip-hop dance lessons, trying a silks aerialist or boxing class, going indoor skydiving, or guiding an inspirational workshop in creativity.
Dr. Rachna Rekhi is a board certified pediatrician and lifestyle medicine physician. Prior to attending medical school she earned a degree in Food Science and Human Nutrition from the University of Florida. After university, she worked as a researcher in the Cardiology Department at Stanford University. She had aspirations of becoming a cardiologist until she attended medical school at McGill University in Montreal, Canada and had a revelation that many adult diseases begin in childhood. After that she focused her energy on becoming a pediatrician in hopes of influencing families to adopt healthier habits at a young age.She has worked at Kaiser Permanente, a large healthcare system, for 13 years. During this time she recognized that children are capable of making great choices about their health if they have the proper knowledge, and they need to be a part of the conversation about their health. She believes that children have the power to influence the adults in their life to be healthier. She co-hosts a podcast called Wellness Wizards with her 9 year old son and 11 year old daughter, where they discuss, simplify, and gamify lifestyle medicine topics including primarily plant based nutrition, physical activity, restorative sleep, reduction of risky substances, social connectedness, and stress reduction. She loves traveling and cooking healthy food with her children. Last year the family took a year off and traveled to 19 countries together, and since then they have made it a goal to travel to all 7 continents together.You can follow their channel at https://www.youtube.com/@wellnesswizardsofficial.You can also check out their audio podcast here:Spotify: https://open.spotify.com/show/0EFWUCmNamD6pLJimbOJxU?si=5de277020f3147edApple Podcast: https://podcasts.apple.com/in/podcast/wellness-wizards/id1713230846Amazon: https://www.amazon.in/Wellness-Wizards/dp/B0CLKW18P1Wellness WizardsYoutubeSpotifyApple Podcast
Melanie Brooks is the author of the memoir A Hard Silence: One daughter remaps family, grief, and faith when HIV/AIDS changes it all (Vine Leaves Press, 2023) and Writing Hard Stories: Celebrated Memoirists Who Shaped Art from Trauma (Beacon Press, 2017) She teaches creative nonfiction in the M.F.A. program at Bay Path University and in the M.F.A. program at Western Connecticut State University and professional writing at Northeastern University. She holds an M.F.A. in Creative Nonfiction from the University of Southern Maine’s Stonecoast writing program and a Certificate in Narrative Medicine from Columbia University. She has had numerous interviews and essays on topics ranging from loss and grief to parenting and aging published in the The Boston Globe, HuffPost, Yankee Magazine, Psychology Today, The Washington Post, Ms. Magazine, Creative Nonfiction, and other notable publications. She lives in New Hampshire with her husband, two children (when they are home from university), and chocolate Lab.Website: https://www.melaniebrooks.com/‘A Hard Silence’ book from: https://shorturl.at/ipHQ4
Megan-Claire Chase, aka Warrior Megsie, is a patient advocate and breast cancer survivor from Atlanta, Georgia. Her blog, Life on the Cancer Train, is famous for being authentic, raw, and informative, with a twist of humor, where she shares her experiences of being a young adult cancer survivor while advocating for better treatments and resources. The blog is syndicated on Cancer Health Magazine's website. Megan-Claire is a highly sought-after blogger and influencer in the cancer community nationally and internationally.In 2023, Megan-Claire was featured in Stories from the Stage episode "Beyond Cancer," which aired on PBS and World Channel. Currently serves on Bayer Oncology's Digital Patient Council, and the Oncology Data Advisory Editorial Board, and is a Board Member for the LYTE Foundation. She hosts two podcasts, The Other Side of Cancer and Our BC Life, and ongoing collaborations with Teen Cancer America to create inclusive content for social media and patient-facing collateral.Megan-Claire co-authored abstracts and presented posters, including Genetic Testing in Metastatic Breast Cancer in the USA: A Podcast | Oncology and Therapy (springer.com), and The Impact of Triple-Negative Breast Cancer in Black Women at the San Antonio Breast Cancer Symposium in 2023, and "You don't really have a say in anything...like you don't have any options": AYA Cancer Survivors' Perspectives on Fertility Preservation Conversations with Healthcare Providers presented at the 16th Annual American Psychosocial Oncology Society (APOS) in 2019 and accepted for a Poster Symposia II: Sexual and Reproductive Health oral presentation at the annual meeting of the Society for Adolescent Health and Medicine and published in the medical journal Psycho-Oncology.Megan-Claire's work is featured in several publications, including Cancer Health, Cancer Today, CURE Magazine, Count Me In, Everyday Health, Elephants and Tea, Dating Roo (UK), Voyage ATL, Humor Beats Cancer, IHadCancer.com, RETHINK Cancer, Pharmaphorum (UK), and WebMD.Blog: Life on the Cancer Train at www.warriormegsie.comSocial Media Links:Instagram - https://www.instagram.com/warriormegsie/Twitter - https://twitter.com/warriormegsieLinkedIn - https://www.linkedin.com/in/megan-claire-chase/Other Links to Projects/Articles:Stories from the Stage on PBS and World Channel episode: Beyond Cancer Watch here.Cancer Health magazine: You Can’t Escape Race in Cancer Read here.Oncology Data Advisor: AYA Cancer Awareness Week: Creating Welcoming Spaces for Support and Advocacy With Dr. Lauren Ghazal, Megan-Claire Chase, and Allison Rosen Listen here.The Patient Story: Megan-Claire's Breast Cancer Story: My Symptoms Were VERY Different Watch here Pfizer: Genetic Testing in Metastatic Breast Cancer in the USA: A Podcast | Oncology and Therapy (springer.com)
Joy Rios, MBA, stands as a distinguished Health IT strategist and a recognized expert in value-based care payment models. Celebrated for her pioneering spirit, Joy was awarded the 2023 HIMSS Changemaker of the Year award for her significant contributions to women in health IT, underscoring her commitment to diversity, equity, and inclusion in the healthcare sector. As founder and host of the "HIT Like a Girl" podcast, and the Like a Girl Media agency, Joy is dedicated to elevating diverse voices and advancing DEI initiatives within healthcare. Her expertise not only bridges gaps between health and technology but also champions the creation of equitable healthcare environments.
Sean Wachter's life is a remarkable narrative of resilience, determination, and transformation. After overcoming a life-changing accident, Sean faced a grueling health battle that led to the discovery of a golf ball-sized lesion in his cerebellum. Despite a challenging journey through misdiagnosis and the eventual confrontation with Stage 4 melanoma, including brain metastases and leptomeningeal disease, Sean's spirit remained unbroken.An accomplished former two-sport collegiate athlete and professional football player, Sean has channeled his relentless energy into professional wrestling, turning it into a platform for raising awareness and funds for cancer research. His return to the ring is not just a personal triumph but also a powerful gesture of defiance against his medical challenges.Beyond the ring, Sean's endeavors extend to significant charitable work. He collaborates with notable organizations like The V Foundation, the Melanoma Research Alliance, and Memorial Sloan Kettering Cancer Center, contributing to brand awareness and fundraising efforts. His journey is a poignant reminder of the power of resilience and the profound impact one can have in the face of adversity.Sean's story, highlighted by his remarkable return to professional wrestling, is a testament to the strength of the human spirit. He embodies the essence of not just surviving but thriving, inspiring countless others with his journey.
Nancy (she/her) is Breast Cancer Prevention Partners’ (BCPP) Director of Program and Policy and works at the state and federal levels to advance public policy to reduce exposures to toxic chemicals. Before joining BCPP, Nancy spent over 20 years in Washington DC advocating for numerous causes, including civil rights for women and the GLBTQ+ community. She graduated from the University of Pittsburgh with a Bachelor of Science in Biology and earned a Masters degree in Biological Oceanography from the University of Connecticut. Nancy is an avid outdoors person, spending her spare time hiking and birding in Northern California and beyond. In the 13 years Nancy has worked for BCPP, she has focused on several issues related to breast cancer prevention including strengthening the country's broadest law governing synthetic chemicals – the Toxic Substances Control Act; implementation of the ban on several phthalates in toys and childcare articles; and advocating for federal resources to support the National Institute of Environmental Health Sciences and environmental health programs at the Centers for Disease Control and Prevention, including the biomonitoring and health tracking programs. Her more recent experience has focused specifically on state legislative work, including BCPP’s co-sponsorship of legislation to remove toxic chemicals from plastic products, require the disclosure of ingredients in cleaning, and banning forever per- and polyfluoroalkyl substances (PFAS) from firefighting foams, paper-based food packaging, and textiles.Breast Cancer Prevention Partners is a science-based national organization working to eliminate toxic chemicals and other environmental exposures linked to breast cancer. You can learn more about Nancy, BCPP, and ways to get involved at www.bcpp.org. Find us on our various socials:Instagram: www.instagram.com/bcppartners X: twitter.com/BCPPartners YouTube: www.youtube.com/c/BreastCancerPreventionPartners TikTok: www.tiktok.com/@bcppartners LinkedIn: www.linkedin.com/company/breast-cancer-prevention-partners
Jade Gibson’s connection to cancer presented itself at the age of 16 when she was diagnosed with late-stage ovarian cancer. The experience ignited a desire to help individuals and families affected by cancer, leading her to pursue studies at the Harold P. Freeman Patient Navigation Institute. There she received education on the newly developing field and learned how to apply the navigation model to eliminate common barriers for patients moving through the healthcare system.To date, Ms. Gibson has entered her 19th year of survivorship – lending her voice to address disparities that plague historically marginalized AYA patients from rural communities. As a champion for cancer advocacy, she participates in interviews, virtual conferences, webinars, marketing research, and fundraising. Additionally, serving in the following capacities:• Committee member for the Georgia Cancer Control Consortium (GC3) Survivorship Workgroup and Georgia Prostate Cancer Roundtable Steering Committees.• Patient Centered Outcomes Research Institute (PCORI) - Adolescent Young Adult (AYA) Advisory Panel project focusing on identifying barriers to recruiting and engaging underrepresented adolescent and young adults in cancer survivorship research.• BVOGUE participant in the “Centering the Marginalized Voices of Black Patients with Gynecological Cancer as a First Step in Healthcare Curriculum Development,” study supported by MOQC (the Michigan Oncology Quality Consortium).• Ovarian Cancer patient expert with Merakoi, creating healthcare solutions to benefit people living with a chronic illness.• Citizen Scientist for the Ovarian Cancer Outreach with the “Connecting Families to Overcome Ovarian Cancer” study led by Emory University.
Denise’s career in healthcare began in a critical access hospital in Washington state and expanded to serve organizations large and small across the US. After working in non-profit and for-profit healthcare sectors and the last decade in patient experience, Denise is now working to Make a Ruckus That Makes a Difference in healthcare. She brings her expertise, passion for serving frontline leaders and employees, and entrepreneurial spirit to every conversation. Denise encourages those she works with to think differently, create synergistic collaborations, develop relationships and connections beyond their organizations and profession, and, of course, make a ruckus.
Dr. Winemaker is a graduate of McMaster University Medical School. She has completed residency training in Family Medicine, and fellowship training in Palliative Medicine. Her clinical work is predominately community based, caring for people in their home. She is an associate clinical professor at McMaster University in the Department of Family Medicine, Division of Palliative Care. She has held multiple leadership roles including McMaster Postgraduate Curriculum Lead, Hospice Medical Director, Regional Palliative Clinical Lead and Medical Lead Palliative Care Outreach Team. She is an active educator and researcher. Most importantly, Dr. Winemaker is an advocate for palliative care reform. She believes strongly that basic principles of palliative care should be the responsibility of all health care providers and integrated into care seemlessly, upstream in the patient’s illness journey. She is the co-creator of the social movement called The Waiting Room Revolution, the co-host of the Waiting Room Revolution podcast, co-authour of the book Hope For The Best Plan For The Rest: 7 Keys for Navigating a Life-Changing Diagnosis, and very active voice on multiple social media platforms. She has won numerous awards for her leadership and palliative care education for health care professionals.
Salih Hendricks is a South African Diabetes Amputee Advocate and shares his lived experience with many around the world on platforms like, DEDOC.org, WHO, IDF, Diabetes South Africa, Diabetes SA Advocacy, American Limb Preservation Society, Bromley Diabetes UK Peer Support Group.He is a Board Member of Diabetes South Africa and South Africa Diabetes Advocacy. He does Peer Support and motivational talks on awareness and prevention of diabetescomplications and amputations. He is always promoting diabetes education with awareness and prevention.https://www.instagram.com/salihhendricks/https://www.youtube.com/watch?v=pXrk-c_zXTUhttps://www.thewaytomyheart.org/https://www.who.int/news-room/events/detail/2021/11/23/default-calendar/ncd-hard-talk-webinar-comprehensive-diabetes-managementhttps://idf.org/what-we-do/advocacy/advocacy-networks/blue-circle-voices/bcv-stories/salih-hendricks-south-africa/https://limbpreservationsociety.org/news/alps-features-salih-hendricks-a-diabetic-and-amputee-advocate/https://www.diabetessa.org.za/dsa-news-autumn-2022/https://www.diabetesadvocacy.org.za/board-membershttps://sweetlife.org.za/life-as-a-diabetic-amputee/
Passionate. Unique. Loyal. Resilient. These words are commonly used to describe Sharron S. Rouse. Sharron is an experienced leader with a demonstrated history of working in the education and nonprofit industries. She is skilled in program coordination, leadership, community outreach, and curriculum development.A native of the Washington, DC Metropolitan area, she has dedicated her life to influencing the world as a kidney disease, dialysis, and now transplant survivor. Sharron actively shares her story to bring hope and healing to anyone facing difficult circumstances in life. In 2022, she started SR Consulting Services LLC to provide support and guidance to educational and healthcare businesses and organizations.To expand the scope of her reach, Sharron founded Kindness for Kidneys International, Inc., a nonprofit organization committed to educating, encouraging, and empowering kidney warriors and their families. With the support of the community, Kindness for Kidneys has gained national attention for their monthly support groups, kidney education program, and annual holiday drives. Sharron remembers what it was like to be on dialysis during the holiday season, which is why Kindness for Kidneys serves over 500 kidney warriors and counting each year. Their annual Holiday Drive has been featured on local ABC and NBC news outlets.Sharron has been a guest speaker for several national and international educational and business-related conferences. She currently serves on the NIH/NIDDK Safety and Monitoring Board for the System Interventions to Achieve Early and Equitable Transplants (STEPS) study, Women of Color in Pharma – TRUST Advisory Board, Quality Insights ESRD Network 5 Patient Advisory Council, Bayer FINE-ONE Standing Patient Council, Health Union Patient Leadership Council, and the Vertex Patient Advisory Board. As an ambassador for the American Association of Kidneys Patients (AAKP) and the American Kidney Fund, she has participated in many patient panel discussions, served as a guest speaker, exhibitor, and Co-Chair for the 2019 and 2020 AAKP National Patient Meetings, was a peer mentor for dialysis warriors at Emory University Hospital, and has represented the state of Maryland for Capitol Hill advocacy days in Washington, DC.Sharron’s hard work and devotion to serving the community has granted her numerous awards including the Presidential Volunteer Service Award in 2020 and 2022, Who’s Who in American Education recognition, Honorable Mention for the Lyfebulb/CVS Kidney Care Innovation Challenge, the AAKP Support Group of the Year award, the Second Chance Show’s Prima award, and the 2023 Health Union Community Cultivator award. Sharron lives in Maryland with her husband Shawn and daughter Kyla. Website: www.kindnessforkidneys.org
Dr Chrysopoulo ("Dr C") is a board certified plastic surgeon, breast reconstruction surgeon and microsurgeon, and President of PRMA Plastic Surgery in San Antonio, TX. Dr C is certified by the American Board of Plastic Surgery and is an active member of the American Society for Reconstructive Microsurgery (ASRM), and the American Society of Plastic Surgeons (ASPS) for which he has served on several breast reconstruction educational committees. He has authored and co-authored several book chapters and scientific articles in peer-reviewed journals on breast reconstruction-related topics, and is routinely an expert speaker at regional, national and international academic meetings. Dr C has dedicated his professional life to advocating for breast cancer patients, and strongly believes that shared decision-making between the physician and patient is crucial in achieving the best treatment outcomes. To this end, he founded Toliman Health, a digital health company committed to helping physicians, healthcare organizations, and industry improve patient experience and outcomes via empowering shared decision-making technology. Toliman’s flagship product, the Breast Advocate® App, is the world's first shared decision-making app for breast cancer surgery and breast reconstruction. Breast Advocate® provides anyone with a breast cancer diagnosis, or at risk of developing breast cancer, a much-needed voice in their breast cancer surgery decision-making. Dr C also leads the Shared Decisions and Personalised Care Expert Group at the World Health Innovation Summit (WHIS).Connect with Dr C: Website: https://linktr.ee/drchrysopoulo Facebook: https://www.facebook.com/drchrysopouloTwitter: https://twitter.com/drchrysopouloLinkedIn: https://www.linkedin.com/in/drchrysopoulo
Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself.She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness!Business and collaboration offers can go through here: Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself.She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness!Business and collaboration offers can go through here. Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself.She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness!Business and collaboration offers can go through here: https://www.adgrenier.com/en/
Samira is a healthcare strategy and design leader who has incubated and operated numerous healthcare startups. She is the founder and CEO of Manta Cares Inc., a global community of caregivers and survivors dedicated to transforming the cancer experience, a company that emerged from her experiences as a cancer survivor. Manta Cares designs and develops tools and resources that enable cancer survivors to regain control and peace of mind. As part of the Manta mission, she hosts the podcast Patient from Hell, which Spotify ranks within the top 10% of all globally shared podcasts.She is also a Venture Partner for Sozo Ventures, a global venture fund that invests in category-defining companies. Before holding those positions, she was VP of Product at Visby Medical, where she launched a multi-million dollar infectious disease test. Samira started her career at McKinsey & Company and has degrees from MIT (Biological Engineering), Stanford University (Design), and Wellesley College (Art History). In her spare time, she can be found practicing martial arts, sketching, writing poetry, and playing with her two rescue dogs.
Shruti Mitkus is the Director of Genetic Education and Navigation at Global Genes, a leading rare disease patient advocacy organization. Shruti is a human molecular genetics scientist and genetics educator. She earned her doctorate in Human Genetics from University of Maryland Baltimore and completed her post-doctoral training at the National Institute of Mental Health, researching the genetic mechanisms of neuropsychiatric conditions such as schizophrenia and bipolar disorder. After working in many different areas related to genetics, such as basic research, pharmacogenomics, genetic diagnostics, and variant interpretation, Shruti felt driven to engage more closely with patients and communities. She transitioned to patient advocacy and now directs programs that inform families about the molecular genetic causes of their illness, guide them through the diagnostic process and educate them about gene-based treatments, work that she describes as “genetic advocacy”. While Shruti loves the science of genetics, she is most passionate about translating her knowledge of genetics in an approachable manner and addressing barriers to access genetic testing and cutting-edge treatments. She is an ardent believer in the power of education to empower and ultimately improve the lives of patients and families. Shruti can be reached at https://www.linkedin.com/in/shruti-mitkus-rarediseasegenetics/
Estela was diagnosed with a progressive neuropathy called Charcot-Marie-Tooth (CMT) at four years old, followed by her younger sister two years later.In 2002, she graduated from FIT with a Bachelor’s in Interior Design. Today, her professional background in design, marketing, trend forecasting, and creative direction brings an unexpected approach to connecting the disability community to wellness, empowerment, and health. After volunteering for eight years, Estela joined the Hereditary Neuropathy Foundation full-time in 2018 as their Program Development Manager. Later in 2018, she testified in front of the FDA on the patient experience and the importance of funding CMT studies and potential therapies.As moderator for the CMT-Connect webinar series, Estela enjoys sharing resources and expert information with the CMT community on various valuable topics. On the EmBrace It Podcast, she interviews community thought leaders and aims to empower women living with disabilities in all facets of life. Estela and co-host Lainie Isbia also provide original inclusion workshops focusing on improving advocacy & DEI through communication tools, starting with “How to Communicate with Anyone About Disability.” They’ve worked with many top brands, such as Levi Strauss, Pinterest, Lockheed Martin, The Abilities Expos, SUNY Farmingdale College, Health Union, and more.In 2019, Estela gave her first TEDx talk titled “RePurpose Your Pain” on turning adversity into life’s most beautiful work. She co-teaches inclusive and adaptive design at the Fashion Institute of Technology for their Design for Social Impact program. Estela is represented by Gamut Management, an all-inclusive talent agency.
Dr. Sarah Parker Ward wants to help you think more affectionately about death so you can experience a healthier, more fulfilling life. Sarah holds a Ph.D. in Emerging Media Studies from Boston University where her research explored death cognition and related policy implications. She continues this thanatological work today both in practice and study as the co-founder of We Are Clio, a digital platform launching in 2024 to empower individuals on their deathcare journey through personalized education and community-building with non-clinical care providers such as death doulas, green burial crafters, and legacy artisans. In addition to death doula training, Sarah has also undergone instruction in mindfulness and psychedelic peer support. You can find this mom of three on LinkedIn and on Instagram at @skparkerward.
Neilanjan Nandi, MD, FACP is an Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center at the University of Pennsylvania. Dr. Nandi's practice focuses on the management of Inflammatory Bowel Disease (IBD, eg, Crohn's disease, Ulcerative Colitis) and recurrent Clostridium difficile infection via Fecal Microbiota Transplantation (FMT). Dr. Nandi serves on the executive council of the Philadelphia Crohn's & Colitis Foundation (CCF), the medical advisory board of the United Ostomy Associates of America (UOAA), coordinates outreach on the American College of Gastroenterology Patient Care Committee and is a founding board member of the South Asian IBD Alliance (SAIA). He also regularly peer reviews research publications and serves on the social media editorial board for the premier journals 'Inflammatory Bowel Diseases' and 'Crohn's & Colitis 360.' His research has focused on studying conditions co-morbid to IBD quality of care such as characterizing the management and consequences of iron deficiency anemia and non-alcoholic fatty liver disease in IBD patients. He has a particular interest in the diagnosis and management of refractory Clostridioides difficile infection and the application of fecal microbiota transplantation in C difficile. Dr. Nandi has helped conduct a number of clinical trials of stool derived microbiome therapies. He has also authored numerous book chapters on the diagnosis and management of various viral, parasitic, mycobacterial and bacterial infections of the GI tract.Dr. Nandi’s fervor for clinical education has been recognized with multiple teaching awards including the 2023 Sidney Cohen Faculty Teacher of the Year for the Gastroenterology & Hepatology division of the University of Pennsylvania. He was honored as the 2019 Physician Hero by the Philadelphia/Delaware Valley Crohn's and Colitis Foundation at their annual Take Steps for Crohn's & Colitis event and wields digital & social media platforms to amplify education, outreach & advocacy in IBD to clinicians and patients. He was also awarded the Philadelphia CCF’s Chairman’s Citation in 2022. He is the regular host of an academic podcast : ‘GI Insights: IBD Crosstalk’ which features high yield, evidence based medicine discussions with guests from different interdisciplinary fields critical to providing comprehensive IBD care. Dr. Nandi’s passions include fitness, cooking, virtual reality gaming, reading and dancing. Follow him on social @fitwitmd.
Erin Moore is a visionary leader and innovator focused on transforming healthcare and building a more equitable economy for health and care. As the founder of Meanwhile Health, Erin leverages her strengths in systems thinking, strategic management, and leadership to drive meaningful change. Erin is an exceptionally skilled communicator, serving as an advisor to executives and delivering compelling talks on innovation and healthcare reform. She is also a gifted writer, using her platform to raise awareness of critical issues and share a bold vision for a better future of healthcare. Her unique blend of leadership, strategic insight, and communication expertise allows her to motivate teams, advance complex initiatives, and achieve transformational results.
Dr. La Toya Luces-Sampson, affectionately known as Dr. Toya on social media, is a multi- faceted individual—a wife, mother, board-certified Obstetrician and Gynecologist, entrepreneur, speaker, and best-selling author. Born and raised in Trinidad and Tobago, she journeyed to the United States where she earned both her Bachelors and Medical Degrees from Howard University in an accelerated 6-year BS/MD program. Her medical training was further honed at Pennsylvania Hospital in Philadelphia.Her medical prowess is only one side of the coin. Dr. Toya is a thriving entrepreneur, being the brainchild behind "Buy Default," a curated directory aimed at promoting Black businesses and professionals. She's also the founder and CEO of Amina OBGYN Consultants, an independent contracting company providing hospital-based OBGYN services. Dr. Toya has broadened her medical practice by embracing telehealth, now offering her expertise to the women of California and Texas.Entrepreneurship became Dr. Toya’s beacon out of professional burnout, igniting a passion for patient education. She leverages her social media platforms to embolden women, providing invaluable insights to help them take charge of their reproductive health and advocate for themselves. Her endeavors echo a central message of empowerment and education, making a meaningful impact on her followers and patients alike.Discover more about Dr. Toya’s mission and connect with her:Dr. Toya’s WebsiteTelehealth Services: Amina OBGYN ConsultantsFollow her on TikTok, Instagram, Facebook and YouTube
Terri Coutee is the Founder and Director of DiepCFoundation. She started the nonprofit organization in 2016, two years after her own successful breast reconstruction, to provide support, education, and resources for those affected by breast cancer facing mastectomy. Terri hosts the DiepCJourney podcast and the DiepC Foundation educational channel where she interviews surgeons, patients, healthcare professionals, and individuals to provide resources and lived stories to listeners. She provides written content through her blog at DiepCJourney.com.Terri is a Project LEAD graduate, an intensive six-day science course designed to train patient advocates from the National Breast Cancer Coalition. She is co-lead on the World Health Innovation Summit shared decision-making expert group. Terri is a consumer patient advocate serving on the DoD-CDMRP for the breast cancer vaccine under the leadership of the team at the Cleveland Clinic. She has co-authored published papers and assisted surgeons and researchers gathering data for on-going studies in breast cancer and breast reconstruction to improve patient experience and outcomes.Terri believes education is the key component for patients being able to have a shared decision-making conversation with their health care team.Here educational resources and social media contact information can be found here:DiepCFoundation Educational Channel on YouTubeDiepCJourney Podcast We are on Spotify, Libsyn, Apple Podcasts, and Amazon MusicDiepCJourney.com BlogSocial Media Channels:LinkedIn: Terri CouteeFacebook: diepCfoundation.orgInstagram: diepcfoundationPinterest: tgcoutee (DiepCFoundation.org)Twitter: @6state
Dr. Eugene Manley Jr is an inspirational speaker that often speaks about overcoming barriers, mentoring, and STEM and workforce diversity. He is a Mechanical Engineer, Biomedical Engineer, and Molecular and Cell Biologist with expertise in musculoskeletal biology, biomechanics, and cancer biology. He is adept at planning and executing complex systems biology problems, imaging, pathology, and combination drug therapies. Currently he is the Founder and CEO of the STEMM & Cancer Health Equity (SCHEQ) nonprofit foundation that seeks to increase STEMM workforce diversity and improve outcomes for underserved and marginalized populations across the cancer care continuum. He previously worked at LUNGevity where he oversaw STEMM outreach and engagement, launched a Minority Mentorship and Training Program, and ran 3 virtual health equity series. Prior to this, he has worked in fundraising and development, scientific grant administration, science writing/communication, and has been a curator of information. He serves on national and international boards regarding health equity, STEMM access and mentoring, and community engagement. His overarching philosophy is not what can he do for himself, but what can he do for those that do not have a voice. Website: https://scheq.orgLinkedin: STEMM & Cancer Health EquityFacebook.com/STEMMCHEQInstagram.com/STEMMCHEQ
Dr. Yun “Sherry” Wang is an Assistant Professor on the tenure track at Chapman University School of Pharmacy (CUSP). Her academic journey is built upon a foundation in Geospatial Science from Washington University in St. Louis, an exploration of Data Science at Monash University, and comprehensive Ph.D. training in Clinical Pharmacy. Since she arrived at Chapman in May 2021, she has established and led the "Patient Safety Lab," a research initiative driven by her profound interests in health service research and pharmacoepidemiology, with a special focus on substance users and chronic disease patients. The "Patient Safety Lab" is a collaborative effort that utilizes diverse real-world datasets to explore various projects, including "Opioid Prescribing and Overdose Deaths Before and During the COVID-19 Pandemic in California," "Utilization of Buprenorphine Treatments in California: A Real-World Assessment of X Waiver Holders and Prescribers," "Spatiotemporal Disparity Mapping of Buprenorphine Treatment," and "Treatment Adherence Disparities among Adolescents and Young Adults with Cancer." These multifaceted projects unite over ten dedicated faculty members and students, fostering collaboration beyond the boundaries of Chapman University.Dr. Wang's professional background encompasses a spectrum of disciplines, including machine learning, epidemiology, clinical pharmacy, health economics, and health service research across Asia, Australia, and the United States. Her contributions are evident through peer-reviewed publications in esteemed journals such as JAMA, Lancet, Clinical Infectious Disease, International Journal of Cardiology, Pharmacogenomics Journal, Drug and Alcohol Dependence, Pain Reports, and Neuroepidemiology. Her editorial role for the "Opioid Epidemic during the COVID-19 Pandemic" Special Issue of the journal Healthcare underscores her dedication to addressing the opioid crisis. Her research findings have garnered attention in ISPOR News Across Asia, Physician Weekly, and the COVID newsletter by the Washington State Department of Health. She received the American Association of Colleges of Pharmacy (AACP) New Investigator Award in 2022. Faculty profile: https://www.chapman.edu/our-faculty/sherry-yun-wangGoogle Scholar: https://scholar.google.com.au/citations?user=-RicqRIAAAAJ&hl=en
Dr David Beaumont is a Consultant Occupational Physician, a doctor specialising in the health of workers. He is a Past President of the Australasian Faculty of Occupational and Environmental Medicine. He provides consultancy services to some of New Zealand’s major employers and also the provision of health and wellbeing programmes through his company Positive Medicine Limited.His book, Positive Medicine: Disrupting the Future of Medical Practice won the BMA (British Medical Association) Medical Book Award for Primary Care, 2022. David is passionate about helping people realise that to truly experience positive health in their lives they first have to change their own understanding of health. To truly have health it must be viewed as a positive concept, with the realisation that it is integral to every area of our lives. To move beyond being experts in disease, doctors need to be able to treat the whole person and empower people to take control and responsibility for their own lives and health.www.drdavidbeaumont.comwww.positivemedicine.com
Our guest on this episode of the HD podcast is Vanessa Joy Walker: Health Consumer Advocate, Survivorship Coach, and Founder of Living After Crisis Inc. Currently pursuing an MPH at UNC Gillings School of Global Public Health, Vanessa collaborates with esteemed organizations such as HMP Global's Psych Congress and Caelum Diagnostic Solutions. Her powerful perspectives on perseverance, patient engagement, social equity, and joy have been featured in prominent outlets like The Wall Street Journal, The Washington Post, The American Cancer Society, K-Love Radio, and Menopause Today.Dedicated to Diversity, Equity, and Inclusion, Vanessa partners with transformative educational firms like The 2043 Project and Point Made Learning, shaping her contributions through a compassionate lens.With over 12 years of experience in healthcare, impact storytelling, advocacy, and operations, Vanessa is devoted to challenging the status quo. She serves as a trusted ally in guiding diverse organizations—whether in healthcare, life sciences, or any organization that prioritizes mental health and well-being.As a published author, sought-after patient advisor, consultant, and coach, Vanessa infuses authenticity and captivating storytelling into every element of her work. From conference rooms to virtual platforms, she fosters empathetic connections through engaging presentations exploring communication's power to ignite change.Connect with Vanessa on LinkedIn @VanessaJoyWalker for invaluable insights and inspiration. For collaborations and inquiries, email vjw@vanessajoywalker.com, and join her in creating a world where health and well-being are human rights."
Nick Holekamp, MD, is the vice president and chief medical officer at Ranken Jordan Pediatric Bridge Hospital. He joined in 2000, and for nearly two decades, he’s helped more than 2,000 children and their families transition from a traditional hospital to home after chronic illness or injuries. Under Dr. Holekamp’s leadership, Ranken Jordan transitioned from a 26-bed pediatric nursing home into a 60-bed, advanced pediatric specialty hospital that is regionally recognized as a center of excellence for the care of children with medical complexities. In 2018, he oversaw a $35-million expansion that nearly doubled the hospital’s capacity, and he continues to lead initiatives that ensure a collaborative, high-quality, patient-centered care environment. He is the chief advocate for carrying out the vision of the hospital’s founder, Mary Ranken Jordan, which was to care for kids beyond the bedside. Dr. Holekamp gives kids their best chance for recovery through Care Beyond the Bedside, the hospital’s care philosophy that melds traditional health care with playful therapies that allows for routine child development, effective rehabilitation, and social re-integration so kids and their families can prepare for successful outcomes at home. His work has helped mold Ranken Jordan into a facility that parents describe as a “seamless, yet critical transition” for their child and that is held in high esteem by medical professionals across the healthcare continuum.In 2017, Dr. Holekamp co-authored “The Effect of a Comprehensive Care Transition Model on Cost and Utilization for Medically Complex Children with Cerebral Palsy, a research paper published in the Journal of Pediatric Health Care.In October, 2018, Dr. Holekamp presented his findings at the annual meeting of the Pediatric Complex Care Association in a talk titled, “An Innovative Model of Transitional Care for Medically Complex Children.”Dr. Holekamp earned a degree in biology from Dartmouth College before graduating from Saint Louis University School of Medicine in 1987. He completed his residency in pediatric and adolescent medicine at Cardinal Glennon Children’s Medical Center. Prior to joining Ranken Jordan, he was a pediatric hospitalist at St. John’s Mercy Medical Center in St. Louis. Website: www.rankenjordan.org
Ibrahim Rashid is the Founder of the Strong Haulers, a digital health platform that leverages data to help those with Long COVID and other chronic illnesses manage their symptoms. He is also the author of Strong Hauler: Learning to Live with Long COVID, a memoir of lessons learned while navigating chronic illness at a young age. His commentary on long covid, impact investing, and politics has appeared in the New York Times, The Atlantic, Scientific American, Psychology Today, the Huffington Post, Wired, MIT Sloan Management Review, and Impact Alpha. In 2021, Impact Alpha named him one of their Ten Voices Who Moved the Conversation for his writing on disability justice and impact investing. He holds a master’s degree in public policy from the University of Chicago. For more information, see https://www.ibrahimrashid.com/
Kathy O'Shea is a 46-year migraineur and 36 year professor of English, who has combined these significant parts of her life into this literary anthology centered around five themes related to migraine. She is the winner the Chancellor's Award for Excellence in Teaching and has two beloved golden retrievers who are official therapy dogs at Monroe Community College in Rochester, NY, where she teaches literature, composition, and humanities courses. She is a regular migraine blogger on psychologytoday.com. Kathy’s anthology has been selected as a first-place winner in Health for Firebird, "Award Winning Finalist” in the Health: category of the 2021 Best Book Awards sponsored by American Book Fest, and has recently received the Book Excellence Award. Kathy has appeared on numerous health-related podcasts to discuss her book and journey with migraine and hopes to use the book to help educate migraine sufferers, their family and friends, medical professionals, and the general public about this debilitating disease. You can get her book ' So Much more than a Headache' here:https://www.kentstateuniversitypress.com/author/kathleen-oshea/
Tanisha Bowman, MSW, LSW, APHSW-C, NEDA Proficient, is a death doula living in Pittsburgh, PA who currently works as a full-time palliative care social worker in a small rural healthcare system. With the support of an amazing palliative care team, Tanisha has been able to explore ways to bring her passion for death care and openness about death and dying into a highly medicalized environment. Her wide range of expertise has piqued the interest of reporters, podcasters, and other medical systems and Tanisha has enjoyed the ability to share what she has learned on a variety of platforms.Tanisha Bowman, MSW, LSW, APHSW-C, CGP, NEDA Proficient Palliative Care Social WorkerDeath Doula
Christina Gagnon is a former micro preemie survivor, born in 1986. She’s someone who’s defeated the odds at times when medical technology was 50/50. It was the time of trial and error. She’s now come to tell her heroic story to all.
Charles Gellman is the Chief Patient Advocate of HiDO Health. His expertise is in clinical informatics and data analysis which accelerates the understanding of health data to improve health outcomes. HiDO research is focused on reducing home medication errors, avoiding unnecessary hospitalizations and saving billions of healthcare dollars. Together health care can enhance transparency to all providers that enables better patient care and equal access to care for all people. HiDO Background Informationhttps://us.hidohealth.com/aboutYouTube Channelhttps://www.youtube.com/channel/UCS-E9J74PeAT0ioieZOZBEQ
Soula MantalvanosArtist, designer and gallerist.Advocate for the better quality of care, founder of My Health Story.Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care.In addition to presenting at medical conferences, Soula has self-published a book, appeared in an award-winning documentary and established the website pudendalnerve.com.au. Soula offers her personal story on the website and found resources to help with the endurance and treatment of chronic pain.Soula's most outstanding achievement is founding My Health Story, an engaging, safe and innovative way for patients to generate and store their personal health experiences.My Health Story (founded as PainTrain – My Health Summary) initially concentrated on pain management. However, founder Soula Mantalvanos realised she could expand her novel health summarising idea to help people with other chronic health conditions such as Stroke, Dementia and aged care.pudendalnerve.com.aumyhealthstory.com.auDesign portfolio ooi.com.auLearn more about becoming a My Health Story Friend or My Health Story Affiliate here: https://myhealthstory.com.au/mhs-friends/
Dr. Molander is an emergency medicine physician with greater than 25 years in clinical care. She analyzes quality of care and is passionate about patient education. Dr. Molander became involved in the world of sepsis in 2007, initially training intensivists in Early Goal Directed Therapy. She served on her hospital Sepsis committee from 2009 to 2015. As chair from 2011 until 2015 she collaborated with fellow Sutter hospitals as they navigated through a new Electronic Health Record and a sepsis initiative serving the critical access hospital to the quaternary care center. She has served on the Sepsis Alliance board since 2018 and was recently their Chair of the Board of Directors. She co-authored a chapter on Sepsis for the American Medical Life Support textbook for Emergency Medical Services and has an updated edition coming out later this year. She is currently participating in a year long Digital Health Fellowship with the goal of optimizing communication amongst patients and providers.
I am a professor of Genetics and Oncology at Memorial University, Newfoundland and Labrador (Canada). My main interests are identifying social and medical outcomes of cancer patients and their predictors (including demographic and biological markers). In the last few years, I also become interested in patient-oriented research and public engagement. I lead the Public Interest Group on Cancer Research that consists of cancer-affected public members as well as cancer scientists. This group designs studies and public outreach activities, including public conferences. It is quite an active local cancer advocacy group as well. In addition, I am a member of Atlantic Cancer Consortium and have roles in organizations/committees with an aim of addressing the issues faced by cancer patients and family members. Help controlling cancer and its effects on the population is very important for me. By doing all of these – that is research, public outreach, advocacy, and committee service, I believe that I contribute to positive change, better studies, effective advocacy, and genuine public outreach that will eventually lead to better survival outcomes, experiences and conditions for cancer patients.
Dr. Jim Feng is a visionary entrepreneur dedicated to revolutionizing the healthcare industry through innovation and technology. With a passion for improving human performance and well-being, Dr. Feng has made significant strides in the field of integrated health models and disruptive healthcare technologies. Driven by his deep understanding of healthcare and affinity for technology-driven enterprises, Dr. Feng has successfully incubated multiple start-ups focused on disruptive healthcare technologies, content aggregation, and real-time language translation. Recognizing the challenges in the physical injury and insurance industry, he recently established Phyxable Inc. This groundbreaking virtual pain and prevention platform employs machine learning, augmented reality, and gamification to guide individuals out of pain while empowering them to achieve optimal human performance. In addition to his esteemed chiropractic degree, Dr. Feng is a Certified Strength & Conditioning Specialist and Medical Acupuncturist. His expertise has led him to direct medical teams for prestigious events such as world championships, professional sports, and Olympic-level competitions in MMA and Wrestling. Beyond his professional accomplishments, Dr. Feng finds fulfillment in high-performance individual sports, embarking on extreme adventures, exploring health-tech and lifespan solutions, and pursuing his passion for Aquascaping. He is a firm believer in giving back to the community and actively contributes to causes that truly matter. With his relentless pursuit of innovation, commitment to improving lives, and exceptional leadership skills, Dr. Jim Feng continues to shape the future of healthcare, inspiring both colleagues and aspiring entrepreneurs alike.
Short Bio Kimberly Reyes is a veteran educator, historian and trained political scientist. She has nearly 2 decades of experience in early childhood and primary education. Fluent in 4 languages, her parenting and educational philosophies pull from both Eastern and Western traditions. She is a mother of a toddler born at 26 weeks, speaking often on the NICU experience and other challenges facing parents whose journey has been anything but ordinary. She can be reached at: www.alltheunexpected.com
Patricia Weltin is the CEO/Founder of Beyond the Diagnosis, a traveling art exhibit that unites art and science to inspire research and innovation of treatments for people living with rare diseases. Artists paint portraits of children living with a rare disease; the portraits then become part of a traveling exhibit for medical schools, research institutes, hospitals, museums, and art galleries around the world. Patricia is the mother of two children living with Ehlers-Danlos Syndrome (EDS), a rarely diagnosed, multi-systemic connective tissue disorder. Her work as CEO of Beyond the Diagnosis led Patricia to make connections among many rare diseases, notably the prevalence of Tethered Spinal Cord (TSC) in the rare population. Patricia, a citizen scientist, was recently published in the American Journal of Medical Genetics.
Erik Cardenas is Co-Founder & CEO at Zócalo Health, a digital health company committed to providing a premier family medicine experience that is tailored for the Latino community. In his 20+ year career, Erik has assumed various leadership roles for companies like Amazon, Everlywell, and Tenet Health. In March 2021, he was appointed to Rogers Behavioral health Board of Directors. Erik is an advocate for proper representation in leadership, recognizing the numerous benefits that minority leaders bring to the table for their communities. He actively promotes the inclusion of women and people of color in leadership roles, and is committed to building a more equitable healthcare system.Website: https://zocalo.health
Christina Cummins (she, her. hers) owns a private practice and consulting agency that offers therapy services and training programs for staff development. She has been in the healthcare field for over ten years, and for most of that time, her focus has been on mental health treatment and leadership. Christina is passionate about helping progressive healthcare organizations reduce burnout and develop leaders at all levels. She also assists organizations in providing trauma-informed care that promotes diversity, equality, and inclusion. Christina believes that increasing skills in healthcare leaders reduce turnover, vital in preventing further trauma to the vulnerable populations they serve
Becky Sansbury, M.Div., has spent thirty-five years focused on crisis care, working with individuals and organizations. Serving as head chaplain for Transitions LifeCare, a hospice and palliative care agency, she provided hands-on spiritual and emotional support for patients, families and colleagues. Simultaneously, she learned principles of dealing with crisis from an organizational perspective due to the intense team interaction required in hospice work. Becky followed that career with leadership in The Avadon Group, specialists in career crisis, working with displaced professionals during the 2008 recession.Distilling underlying principles of crisis response, stabilization, and resilience within multiple areas of disruption, Becky developed the After the Shock™ process. She speaks to national organizations, such as Blueprint Medicines, Fisher House Foundation, and Ronald McDonald House Charities®, providing them with fresh perspectives and new tools to supplement their work with individuals and organizations in crisis. In addition, Becky consults directly with medical and corporate leaders when personal or professional crisis disrupts their work.Becky’s book, After The Shock: Getting You Back On The Road To Resilience When Crisis Hits You Head On, was published in paperback and digital versions in 2015.Shortly after the book was published, Becky needed to use her own process. For five years Becky provided in-home, solo caregiving for both her elderly mother and adult daughter. That experience reinforced Becky’s dual conviction that regardless of the diagnosis, all good care is palliative and the greater the shock, the more crucial the need for comfort. Her mantra has become, palliative care for all people all the time.www.BeckySansbury.com
Dr. Jessica “Jess” Daigle is a board-certified pediatrician, Nicu and pediatric hospitalist, and the Founder/CEO of Mom & Me MD, an in-home & virtual concierge practice in Atlanta designed to deliver 1:1 personalized care to newborns and their mothers during the 4th trimester to ease the transition home after birth.Dr. Daigle received her Doctor of Medicine at LSU School of Medicine New Orleans and completed her pediatrics residency at Morehouse School of Medicine, along with extra training in neonatal-perinatal medicine at the University of Maryland Medical Center. She is a former Medical Director at a Level 2 NICU at Wellstar Regional Hospital and currently works as a Locums pediatrician while building her businesses. She is a co-author along with 46 other female physicians in a book called “Made for More: Physician Entrepreneurs Who Live Life and Practice Medicine on Their Own Terms” available on Amazon and other book platforms. She has been featured on many different podcasts and is on the cover of this month’s issue of “Baby Whisper,” a parent magazine in Atlanta, Georgia.Dr. Daigle enjoys educating, advising, and reassuring moms, especially new moms and nicu moms. Interested in learning more about newborn and postpartum care? Follow her on Instagram @momandme_md.
Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. This young woman relentlessly fights for improved access to health care for rare disease patients in her home country and shares the story of her path to the diagnosis of EDS diagnosis in the context of a place where healthcare resources cannot be taken for granted. She established an NGO to help all rare disease patients in Lesotho.
Andrea Anampa-Guzmán was born in Lima, Peru. She is a medical student at Universidad Nacional Mayor de San Marcos. In 2017, she took a break from her medical studies to perform a research rotation at the University of Pennsylvania. In 2021, she became a permanent resident of the United States and moved to Buffalo, New York. She performs research for the Department of Medicine at the Roswell Park Comprehensive Cancer Center. Anampa-Guzmán is an assistant producer of the DEI shift, a podcast of the American College of Physicians (ACP). Nowadays, she volunteers for the Social Media Working Group of ASCO (American Society of Clinical Oncology). Additionally, she is part of the team of the Clinical Problem Solvers and the #HemOnc Fellows Network. She is interested in medical education, survivorship, global oncology, and lymphoma. Andrea Anampa-Guzmán has published over 25 research articles and numerous awards, including the MOLA-Michael Reese Foundation Scholarship, AACR Global Scholar-in-Training Award, and the ASCO Annual Meeting Research Award. Finally, Anampa-Guzmán is open about her experience living with Obsessive-Compulsive Disorder (OCD) and advocates for mental health, diversity, and equity.WEB PAGE: https://www.andreaanampag.com/TWITTER: https://twitter.com/AndreaAnampaGLINKEDIN: https://www.linkedin.com/in/andreaanampag/
Dr. Naesha Parks was born and raised in Thomson, Georgia. She has had a number of spiritual encounters, which have contributed to her strong faith and belief that all things are possible to those who believe. Her recent encounter left her with an amazing story that she believes was meant to bless the lives of others. Dr. Parks has twenty years of experience in Early Childhood Education and Leadership. She received her Bachelor’s degree in Elementary Education and her Specialist and Doctoral degrees in Educational Leadership. She is currently serving as an administrator in the Columbia County School System. When she is not working on behalf of her students, teachers and community, she spends her time with her family.Website: naeshaparks.com Facebook-HeartmatterswithDr.PInstagram-heartmatters_dr.pLinkedIn-Naesha ParksTwitter-@naesha_parks Podcast:Podcast streaming on all streaming platforms “Heart Matters Podcast”
A suburban Philadelphia native, Rob is a former All-American punter at Syracuse and has lived the rare disease journey. In December of 2010, late in his senior season, Rob was diagnosed with anaplastic astrocytoma, a rare and aggressive form of brain cancer. His prognosis at the time was less than encouraging, and his surgery, recovery, and treatment took 16 months. Prior to his diagnosis, Rob was on a path to the NFL as a punter, but that opportunity was lost by the time he was healthy enough to train again. A graduate of Syracuse University, Rob pursued a Masters in New Media Management from the S.I. Newhouse School of Public Communications. He also received a B.S. from the Martin J. Whitman School of Management.Rob played football all four years for the Orange and was voted team captain by his teammates his final two seasons. He became the second Executive Director of Uplifting Athletes at the end of 2018.Uplifting Athletes website: www.upliftingathletes.orgTwitter: @upliftingathInstagram: @UpliftingAthletes Facebook: Uplifting AthletesLinkedIn @Uplifting Athletes You can find him on social media @roblong47
Robin Powers is an expert in Ehlers-Danlos syndrome and other rare connective tissue disorders. She is a PCORI Ambassador, she is a seasoned advocate for rare diseases and patients with undiagnosed conditions and is also a motivational speaker. She is a researcher and biochemical pharmacologist, earning her degree at Buffalo State College in 2019.
Tim McLerran is a physician entrepreneur-turned AI software developer with a mission to bring together human and machine intelligence in day-to-day clinical practice. He co-founded Medical Intelligence One to carry out that mission, and the company is currently building technologies and services that help people obtain diagnoses for rare diseases. The beta version of their rare disease search tool is available for patients and clinicians to try for free at https://www.mi1.ai/enola.
Vanessa Ferreira is a patient advocate who has committed more than 14 years of professional and personal commitment to patient associations in numerous countries and areas, such as rare diseases and cancer.She holds an MBA from Sorbonne University Paris and a Ph.D. in cell and molecular biology. She has one sister living with a rare disease called Congenital Disorders of Glycosylation (CDG).In 2022, she co-founded Humanized Solutions, whose mission is to support different stakeholders by implementing solutions co- created with the patient voice. She is interested in fosteringsustainable collaborations and establishing patient-centricity as a norm for better health outcomes. Since 2021, she has been Chief Engagement & Alliances Officer at Buddy service App. From 2011- 2020 Vanessa worked in the pharmaceutical sector to speed up research and medicines development in coordination with patient groups.Vanessa Ferreira founded the Portuguese Association for CDG (APCDG) in 2010. In 2016 she implemented the World CDG Awareness Day and she co-founded CDG and Allies, the sole community- centric international research network for CDG. Vanessa's rigorous structure and successful approaches allow her to actively listen to what is essential to families and professionals, ensuring that all projects are co-created with the community. She has a proven track of scientific publications (~30 articles), focused on gathering insights with and for the CDG community. Everything she does is transferable across therapeutic indications. Vanessa initiated the World CDG organization in 2020 with various partners and CDG patient associations (worldcdg.org). She has represented patients in EURORDIS since 2010. She represents CDG as a member of the Steering Committee and Single Point of Contact (SPOC) of the European Reference Network for Hereditary Metabolic Disorders (MetabERN).
Dr. Neuro has 10+ years of experience of providing clinical, policy, and technical leadership for infectious diseases worldwide with the U.S. Government. In recent years, he has provided his support for the 2014 Ebola Outbreak, HIV/AIDS, Tuberculosis, Malaria, Zika, Monkeypox, and COVID. His focus is in bridging clinical evidence to actionable policy that targets highest risk populations and ensuring accessible/equitable access for all. During his off-time, he spends countless hours fighting misinformation/disinformation & answering questions on social media while encouraging evidence-based decisions for his community. Link:Twitter - https://twitter.com/Neurofourier/Twitch – https://www.twitch.tv/dr_neuro
David Law is an internal medicine physician and hospitalist. He is also a musician, an award-winning filmmaker, and most importantly he is a rare disease advocate in honor of his daughter, Violet, who is diagnosed with a progressive neurologic condition, GM1 Gangliosidosis. He lives in Los Angeles with his wife, Dr. Veena Sison, a developmental pediatrician.LinksThe Cure GM1 Foundation: www.CureGm1.orgA Cure for Violet Facebook Page: www.facebook.com/ACureForVioletGoFundMe: https://www.gofundme.com/f/a-cure-for-violetMy Film page: www.3rdCallProductions.com"Code"- our award-winning short film on burnout: https://www.youtube.com/watch?v=d9y5yvPsTYw&t=18s
Dr. Diana Londoño is the founder of Physician Coach Support.com, where doctors can get free and confidential, peer led support over Zoom 7 days a week. She is a certified life coach and founded this platform to help her colleagues as burnout rates are at 60% or greater for many specialties. She received the Los Angeles Medical Association Physician Leadership Award for her work with Physician Coach Support. She is one of the few female Latinx urologists in the country making 0.5% of Urologists. She has experienced burnout twice herself and because of that, she writes and speaks passionately about wellness and humanity in medicine on social media and on television. She is the co-host of the live stream podcast “Supernova Sistas Physicians in Motion” in which the mission is to bring joy, positivity, and light to your day by discussing topics such as mindset, gratitude, self-care, connection, and integrating mind, body, and soul for optimal health. She says if Physician Coach Support.com can pull just one doctor from the brink of burnout, it is all worth it.Physiciancoachsupporthttps://dianalondonomd.com/https://www.youtube.com/@dianalondonomd(4) Diana (Thorne) Londoño, MD | LinkedInDiana Londoño, MD. Urologist, Life Coach. (@dianalondonomd) • Instagram photos and videoshttps://twitter.com/DianaLondonoMDhttps://open.spotify.com/show/0fTphUt6fh6s0VeuU8WjbV?si=5550d9be2ba24d8b&nd=1
Swapna Kakani is a nationally known speaker, and an award-winning advocate in rare and chronic disease healthcare delivery and the patient experience. Her life story shows audiences her individual resilience and self-determination in the face of constant difficulties, as well as the impact her healthcare advocacy has across disciplines. Swapna was diagnosed with the rare disease Short Bowel Syndrome at birth and for her entire 33 years has lived with nutrition through an IV and/or a feeding tube. In 2014, she had a small intestine organ transplant. Swapna through her platform, Swapna Speaks, has spoken across the world to several healthcare companies and associations motivating their leaders to make a difference within themselves and in their organizations to create and sustain valuable patient-and family-centered care across the care journey. Her recent presentations include the Cleveland Clinic Patient Experience Summit, the Healthcare Information and Management Systems Society (HIMSS) Conference, the Association for Vascular Access, and a TEDx talk. Swapna also does healthcare advocacy and policy work for the Short Bowel Syndrome/Intestinal Failure and broader rare disease communities in her home state of Alabama and nationally. In 2017, she founded Alabama Rare, a grassroots coalition to unite the state around the rare disease population, which has passed state bills and started educational initiatives for families affected by rare disease in the state. In 2021, she co-founded the gutsy perspective, a research initiative driven by members of the short bowel syndrome (SBS) community to investigate quality of life, and priorities, of patients with SBS and their families. The initiative published their first journal article in Journal of Pediatric Surgery in October 2021. Swapna, originally from Huntsville, AL, received her Bachelor's in Psychology and Master’s in Public Health from the University of Alabama at Birmingham (UAB). You can find Swapna on Facebook, Instagram, or Twitter @SwapnaSpeaks or on Linkedin at www.linkedin.com/in/Swapna Kakaniwww.swapnakakani.com Alabama Rare – www.alabamarare.orgthe gutsy perspective – www.thegutsyperspective.org
After growing up in rural Southeast Alaska, Orion studied business and social entrepreneurship at the University of Oregon where he received the Oregon Student Impact Entrepreneur of the Year Award in 2013.While finishing school, Orion co-founded Orchid Health with the vision of creating a new model of primary care that better serves both healthcare professionals and patients alike.Over the past eight years, Orion has served as the visionary behind growing Orchid from 1 rural health clinic in Oakridge, Oregon, to a network of four integrated rural health and school-based clinics in some of Oregon’s most under-resourced communities.Early in his journey, it became clear that in order to best serve their communities, it was imperative that Orchid first redesign the healthcare workplace focusing on creating a healthy environment for team members. This resulted in Orchid shifting its primary focus from patient experience and population health to employee wellbeing and joy in work.The Orchid relationship-based care model has achieved success across the quadruple aim including being recognized as one of Oregon’s top places to work in 2021, averaging a 9.5 out of 10 when asking patients “would you recommend Orchid to family and friends”, achieving a 40% reduction in Medicaid ED utilization over a three year period at its first rural health clinic, and proving that it is possible for a relationship-based model of care where primary care providers see between 10 and 15 patients/day to be financially sustainable.Orion was named the 2020 Rural Health Hero by the Oregon Office of Rural Health and continues to be a vocal proponent for the need for a significant paradigm shift to occur in how healthcare organizations are structured and run to become more people-positive and complexity conscious.Orion lives in Portland with his partner and dog, loves going on van camping trips, and traveling back home to Southeast Alaska where he grew up.
Emily Parks is a chronically ill young professional based out of San Francisco working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown University Hospital.Combining her expertise in behavioral health with her lived experience of navigating multiple tertiary hospitals firsthand has led her down the path of studying the impact of medical trauma and medical PTSD on patients and its influence on treatment outcomes. Emily founded the organization POP!, where she hosts patient lead discussion groups on all things medical PTSD related in an effort to learn what providers need to know about the mental health side of the patient experience.
Gary David is a Professor Sociology and Experience Design at Bentley University in Waltham, Massachusetts. His work focuses on how to create experiences that bring people together to create a sense of connections and belonging. In experience design, he specializes in customer, user, learning, employee, and patient experiences. He also researches the design and use of technology for the workplace. Along with his teaching and research, he is the co-host of Experience by Design podcast (https://experiencexdesign), where they explore experience designs of all kinds. Finally, he is a professional keynote speaker and trainer for professional development (https://garycdavid.com).
Trevor Maxwell, 45, has been living with stage IV colon cancer since March of 2018. He has undergone five major surgeries, chemotherapy, immunotherapy, and a clinical trial. He lives in Maine with his wife and two teenage daughters.
In January of 2020, Trevor founded Man Up to Cancer, a purpose-driven company and support community that inspires men to connect and avoid isolation during our cancer journeys. MUTC is comprised of a podcast, website, annual retreat, chemo backpack program, and a Facebook group with nearly 2,000 men impacted by cancer. Trevor is writing a book scheduled to be independently published in December of 2022.
Man Up to Cancer has partnerships with Seagen, CURE/MJH Life Sciences, Natera, Fight Colorectal Cancer, American Association for Cancer Research, GI Cancers Alliance, COLONTOWN, Global Colon Cancer Association, and Ancora AI.
As a patient advisor, Trevor serves on advisory boards for Seagen, WCG Clinical, and Blue Note Therapeutics.
Sarita Edwards is CEO & President at the E.WE Foundation, a nonprofit healthcare advocacy organization. She began her efforts of advocacy and public policy after her 5th child was diagnosed in utero with rare disease Edwards Syndrome or Full Trisomy 18. Sarita is recognized as a world's top patient expert and social health ambassador. She is an award winning advocate and host of the Being Rare Podcast, a digital resource hub and community conversations platform popular for its 60 second episodes. Sarita serves on executive boards and advisory councils within her home state and across the country. She is a rare disease legislative advocate, a member of multiple coalitions, and an active participant in DEIA workgroups. Sarita also serves as a Community Congress member providing advice and insight on urgent policy initiatives. Sarita has a Bachelor of Science is Health Science and is a candidate for her Masters in Healthcare Administration. She has professional experience in Healthcare Operations & Patient Access. Sarita has certifications in Seizure Recognition & First Aid from the Epilepsy Foundation and Mental Health First Aid from the National Council for Behavioral Health & Mental Wellbeing. Additionally, Sarita has continuing education studies in effective parenting, understanding childhood behavior, and child abuse & neglect prevention. Sarita lives in North Alabama with her husband and their five children.
Doug Lindsay has spent the last two decades investigating and tackling rare, complicated medical conditions – first in himself and his family and now through his Personal Medical Consultant service. An innovator, Doug partners with clients and experts to make new things happen. He works to get clients who are stuck in the medical system unstuck. To aid him in his work, he strives to understand healthcare from all levels of organization, from the individual to health systems, public health, and global health. Doug’s dogged, indefatigable ability to chase down answers to an individual’s complex problems makes him a special asset as a teammate and Personal Medical Consultant. In addition to his Personal Medical Consultant service, Doug Lindsay • Co-chairs PCORI’s Congressionally-mandated Rare Disease Advisory Panel (RDAP) • Co-chairs Washington University School of Medicine’s Community Advisory Board for the Institute for Clinical and Translational Sciences and the Institute for Public Health (ICTS & IPH). • Is Community Advisory Board member for the National Institutes of Health’s ACTIV-1 IM trial. (ACTIV is the US government’s public/private/nonprofit collaboration for Accelerating COVID-19 Therapeutics and Vaccines research.) • Is member of the National Institutes of Health’s ten-person ACTIV COVID Biospecimen Prioritization Committee. (NIH) • Is member of Academy Health’s Global Health Interest Group. • TEDx talk Operation: Adrenal Gland can be found at TED.com • Was speaker in the panel kicking off Academy Health’s Datapalooza, 2019 • Has twice been an ePatient Scholar at Stanford Medicine X (2017, 2019) • Appeared on The Dr. OZ Show in fall 2019 as example of The Power of 1 (to make a difference). • Was the first patient invited to give a fireside chat for the Health Management Academy, which hosts C-Suite education conferences for the nation’s 100 biggest hospital systems, 2017. • Co-chaired aviation humanitarian nonprofit Wings of Hope’s “Taste of Hope” fundraiser • Has been keynote speaker for national organizations like AHIMA, for healthcare conferences like the Society for Participatory Medicine, and at internal corporate events for firms like Pfizer. • Graduated with honors from Rockhurst University’s Honors College with a BS in biology in 2016. • CNN online feature “This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself” on his story was the #3 article globally across all media platforms for all of 2019 for time readers spent reading it.
Michael W. Rabow, MD, FAAHPM, the Helen Diller Family Chair in Palliative Care, is a Professor of Clinical Medicine and Urology at UCSF. He is the Associate Chief of Education & Mentoring in the Division of Palliative Medicine in the Department of Medicine, and the Medical Director of Palliative Care at UCSF’s Helen Diller Family Comprehensive Cancer Center (https://cancer.ucsf.edu/people/profiles/rabow_michael.3627). Board-certified in internal medicine and hospice & palliative care, Dr. Rabow directs a leading outpatient palliative care program-- the Symptom Management Service. In addition, Dr. Rabow is a member of UCSF’s Academy of Medical Educators and is the Founding Director of the MERI Center for Education in Palliative Care at UCSF/Mount Zion (https://meri.ucsf.edu). Dr. Rabow was the winner of the 2017 AAHPM PDIA National Palliative Care Leadership Award. He is a past recipient of the Soros Project on Death in America award and the Hastings Center Cunniff-Dixon Physician Award.
Jared Rubenstein is a pediatric palliative care doctor and medical educator. He is passionate about using communication tools, creativity, and humor to help people talk about hard things. He lives in Houston, Texas, USA with his wonderful family.
Youtube channel: https://www.youtube.com/channel/UCwzLhSI2v1ySPbU-LPTZzbQ And twitter handle is @DrJRubenstein
Marijke Vroomen Durning always wanted to be a writer but her teachers and parents didn’t support that choice; they told her to choose something more practical. She became a nurse
As an RN, Marijke literally worked with patients from life to death. Her first job was working with new mothers and their infants on a postpartum ward. One of her last clinical jobs was in a hospice. But Marijke’s dream of writing never left and slowly but surely, she started working on developing that career.
She stopped working clinically in 2009, taking her part-time writing to a successful full-time career. Although Marijke writes for professional-level outlets, she prefers to write for the general public. She explains that her writing is like the bedside patient teaching that nurses want to do but don’t have the time. Marijke also wrote a book called Just the Right Dose: Your Smart Guide to Prescription Medications and How to Take Them Safely because as a nurse, she saw so many people who didn’t take their medications properly.
In 2009, Marijke joined a fledgling organization, Sepsis Alliance, as a part-time contractor. Back then, sepsis awareness was abysmal and there was little online about it. Over the past 12 years, the small but dedicated Sepsis Alliance team worked hard to educate the American public about this often deadly condition. And there is progress. More people now know about sepsis and Sepsis Alliance has become the go-to organization for sepsis-related information and support. But there is still more work to be done. There are two parts of the site for which Marijke, now the senior clinical content advisor, feels particular pride: The Sepsis and… library and the Faces of Sepsis™ section.
Marijke gets upset when she hears of teens and young adults who are discouraged from following their dreams by adults who are supposed to encourage growth. She knows how that feels. But she also wonders sometimes if she would have been a successful writer had she not been a nurse first. This experience enabled her to develop her niche in the writing world. So while she still feels that her teachers were wrong, she did find her path eventually.
Marijke lives in Montreal, Canada, where if she’s not at her desk educating people about health and wellness, you will likely find her in her sewing room, where she is designing and creating beautiful quilts.
You can find her professional website at medhealthwriter.com and her quilting site at MyCreativeQuilts.com.
LinkedIn: https://www.linkedin.com/in/marijkevroomendurning/ Twitter: MarijkeD
Seth Rotberg is a patient advocate, community connector, and motivational speaker. His passion is driven by his mother’s 17-year battle with the rare, genetic disease known as Huntington’s Disease (HD). Through his 13 years of experience navigating the healthcare system, he’s worked with different healthcare stakeholders including: patient advocacy organizations, patient influencers, pharma/biotech, genetic counselors, and healthcare recruitment companies. Seth has a master’s in nonprofit management from DePaul and currently resides in Chicago. Watch his TEDx here: https://www.youtube.com/watch?v=5_O5TfMVqD8
and follow him on Instagram here: https://www.instagram.com/srotberg15/
After suffering a stroke and dissecting three of the four arteries that supply blood flow to her brain, Pam Mace was diagnosed with Fibromuscular Dysplasia (FMD). There was no patient organization at the time, and Pam quickly learned there was a lack of knowledge and understanding of FMD. She applied her nursing knowledge and skills to raise awareness of FMD and to promote education. FMDSA was incorporated in 2003, and after volunteering with the organization for six years, she gave up her clinical nursing career to serve as the Executive Director of FMDSA. Pam successfully led the campaign to get FMD recognized as a rare disease, cause of stroke and aneurysms. Pam is personally responsible for bringing FMD experts around the world together and for helping to facilitate and support patient groups worldwide. In addition, Pam serves on the Steering and Publications Committees for the United States Registry for Fibromuscular Dysplasia. Pam has more than 20 years of experience working as a registered nurse, primarily in the emergency and trauma departments. She also has experience working in the Cath Lab, on a Critical Care Transport Team and in the Intensive and Coronary Care Units. Working with her advisory boards, Pam and her team transformed FMDSA from a "kitchen table" organization to the highly respected, global organization that it is today. They have built a network of volunteers, physicians, researchers, and rare disease resources worldwide. For the last 14 years, she has planned and coordinated the FMDSA annual meetings, which has included working with researchers to facilitate saliva collections, blood draws, and quality of life studies to further the research of FMD.
Ryan Prior covered health, science, and wellness during the Covid-19 pandemic as a journalist based at CNN's World Headquarters in Atlanta. He specializes in feature writing, going deep with characters who are on a mission, and who have a message for all of us.
He is fascinated by figures, large and small, who dedicate their lives to changing our world, profiling Nobel Laureate Kailash Satyarthi, legendary journalist Ted Koppel, and New York Times bestselling author Stephanie Land, to name a few. He is most passionate about writing on politics, foreign affairs, health, and science. In 2019, Prior wrote about a college dropout, bedridden for 11 years, who went on to invent a new surgery and cure himself. The story received the highest engagement of any story published by CNN in 2019, and the third-highest for all online news outlets, according to Chartbeat. Prior has walked along the Berlin Wall interviewing an artist who transformed the symbol of the Iron Curtain into the world's longest art gallery. He stood on the trading floor of the New York Stock Exchange, where he interviewed entrepreneurs at the top 50 companies in the world with founders under 26. He walked the campaign trail filming Jon Ossoff, as the candidate sought victory in the most expensive House race in history. And he became a producer of the "Young People Who Rock" video series, which highlights young idealists seeking to change the world. In 2021 he was named a Journalist Law School Fellow and in 2019 he was selected for a RIAS Fellowship, traveling with American journalists to meet with EU, NATO, and German officials in Brussels, Prague, and Berlin. He is a five-time Stanford Medicine X ePatient Scholar. And he sits on the board of directors of the #MEAction Network.
Prior started as a News Assistant at CNN in 2015. He has published stories for CNN’s US, World, Business, Health, Style, Travel, Tech, Politics, Impact Your World, and Freedom Project sections. Prior to joining CNN, he directed, produced, and wrote a feature-length documentary called "Forgotten Plague," which the Huffington Post called a "Must-See Documentary." He has also written for the Daily Beast and USA Today.
While a student at the University of Georgia, he co-founded the Georgia Political Review and served as editor-in-chief. He graduated Phi Beta Kappa from UGA with degrees in English and international affairs, and was recently named to the school's 40 Under 40 list for 2018. His book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever, is out November 15, 2022 through Post Hill Press/Simon & Schuster.
Dr. Petrosoniak is an emergency physician and trauma team leader at St. Michael's Hospital. He's the inaugural lead for translational simulation at Unity Health Toronto. He’s an assistant professor at the University of Toronto where his research work focuses on 1) using in situ simulation to improve systems and design and 2) optimizing the care of bleeding patients. He's also co-principal of Advanced Performance Healthcare Design, a design and consulting firm that uses simulation to inform enhance high stakes decision making.
Richie Kahn is a public health professional by training, clinical researcher by trade, and patient advocate by necessity. He is intensely passionate about incorporating patient and caregiver perspectives into the clinical development process, ultimately reducing the time it takes to bring promising new therapeutics to the patients that need them most.
Sadie Elisseou, MD is a primary care physician in the Boston VA healthcare system, a Clinical Instructor of Medicine at Harvard Medical School and Adjunct Instructor of Medicine at Boston University School of Medicine, and a nationally recognized expert in the field of trauma-informed care (TIC), an organizational framework for supporting survivors of various forms of trauma. Dr. Elisseou's award-winning curriculum on ‘trauma-informed physical examination’ is now being taught at medical schools and healthcare institutions across the country. During the pandemic Dr. Elisseou worked with VA colleagues to publish a framework for trauma-informed telehealth. Dr. Elisseou is the co-founder of the Veterans Health Association TIC Collaborative and a member of the Trauma Informed Health Care, Education and Research (TIHCHER) collaborative and the Harvard Medical School TIC Steering Committee. She enjoys building platforms for educating healthcare professionals in trauma-informed practices. You can reach her at www.sadie-elisseou.com.
The Substance Abuse and Mental Health Services Administration, or SAMHSA, has identified 6 core principles of a trauma-informed approach. #1 is Safety. #2 is Trustworthiness and Transparency. #3 is Peer Support. #4 is Collaboration and Mutuality. #5 is Empowerment, Voice, and Choice, and #6 is attending to Cultural, Historical and Gender Issues. Dr. Elisseou and others in the field are applying these principles to healthcare delivery
According to The Substance Abuse and Mental Health Services Administration, or SAMHSA, a trauma-informed organization must follow these 4 Rs: it must realize the widespread impact of trauma, recognize the signs and symptoms among clients and staff, respond by putting trauma-informed measures into practice, and resist re-traumatization. Dr. Elisseou works with healthcare organizations to incorporate these 4 Rs into daily operations
Catherine Foot is Director of Phoenix Insights, a new think tank set up to transform the way society responds to the possibilities of longer lives. Phoenix Insights is part of The Phoenix Group, the UK’s largest long-term savings and retirement business.
Catherine is a research and policy specialist in ageing and longevity, and from 2015 to 2021 was Director of Evidence at the Centre for Ageing Better, a charitable foundation funded by The National Lottery Community Fund, and part of the government’s What Works Network. Catherine has also held senior roles at the health and social care think tank The King’s Fund, and the medical research charity Cancer Research UK.
Gay has been active in the Rare Disease community for over two decades and continues her efforts to build and support patient and family advocacy.
Co-founded ADCY5.org, the foundation for ADCY5-related dyskinesia. ADCY5.org supports world-renowned researchers who study the gene and its variant. She continues to build a community of hundreds with this disease, when they started with only 1.
She is an advocate of genetic testing, shared data, and patients owning their data. Her focus remains to help all Rare Disease patients find testing and teach them how to maintain health records.
Gay successfully advocates for access in a variety of environments including, but not limited to, genetic testing ,education in classrooms, private, state, and federal insurance, as well as collaborating in the Rare Disease space to gain access to clinical trials and medical therapies.
In addition to being the keynote speaker for the Biocom Annual Dinner, she has spoken to audiences of up to 1,000 attendees about her experience of having an undiagnosed child for 15 years, getting a diagnosis through Whole Genome Sequencing, and building a community around an unknown genetic disease.
She is currently the Director of Patient Advocacy & Engagement at Neurogene Inc. and applies her life learning to help other Rare Disease families.
Links:
Gay: https://www.linkedin.com/in/gaygrossman/
Foundation: www.ADCY5.org
Lilly: www.LillyGrossman.com https://www.linkedin.com/in/lillygrossman/
Laurie had a 25 year career in financial services and was President of Los Angeles-based fixed income software firm Capital Management Sciences (IDC Fixed Income Analytics). Diagnosed with incurable Stage IV follicular non-Hodgkin lymphoma at the age of 46 in 2006, Laurie was forced to retire to focus on her health and had 12 years of continuous cancer treatment. She had seven different lines of therapy including 3 clinical trials. In 2018, she received CAR-T in a clinical trial and finally achieved a complete remission where she remains today.
Laurie spends considerable time assisting cancer patients navigating the challenges a cancer diagnosis brings. She is a Leukemia & Lymphoma Society (LLS) First Connection volunteer reaching out to newly diagnosed and relapsed blood cancer patients to provide support. She is also an LLS Public Policy Volunteer Advocate, fighting for legislative changes to benefit cancer patients in Washington D.C. and Sacramento, CA. She is an active volunteer fundraiser for LLS and is currently raising $250,000 for LLS funded immunotherapy research grants. In combination with that, she is in training to climb to the Mount Everest Base Camp with a group of her oncologists and other patients. Unable to travel internationally as a result of her tweaked immune system, Laurie will complete the 26.2 mile D.C. Marine Corps Marathon on October 30, 2022. She welcomes any and all donations to her LLS fundraiser at www.bit.ly/CarTSupergirl - all donations will fund immunotherapy research via LLS research grants.
In order to raise awareness of the groundbreaking immunotherapy, CAR T, that finally led to her being cancer free, Laurie has written numerous articles for publication in a variety of media and enjoys public speaking opportunities.
She served on the Wells Bring Hope Board of Directors for 8 years, with the mission of bringing safe water to Niger, one of the poorest countries in the world and was also on the Board of Directors of Audit Integrity/GMI Ratings until its sale to MSCI.
Laurie was a Russian language and International Relations major at Colgate University. She resides in the Hollywood Hills in Los Angeles with her husband, Ben, and they have a son, August who graduated from college in Washington D.C. in May 2022. August was in kindergarten when Laurie was diagnosed and spent his entire elementary, middle and high school years with a mom in cancer treatment.
You can donate to her cause here: http://pages.lls.org/tnt/calso/corps22/LAdami
Benjamin F. Miller, PsyD, is the President of Well Being Trust who oversees the implementation of the foundation’s strategies, full portfolio of investments, and partnerships. Dr. Miller’s previous role as Chief Strategy Officer of Well Being Trust ensured alignment across the foundation’s grants, research, partnerships and policy recommendations. A clinical psychologist by training, Dr. Miller is a nationally recognized mental health and policy expert who has worked to advance mental health throughout his career. He oversees the foundation’s portfolio alignment across grantees, overall strategy and direction, and connection of the work to advance policy. Previous roles include being the founding director of the Eugene S. Farley, Jr. Health Policy Center in the Department of Family Medicine and the University of Colorado School of Medicine. Dr. Miller is currently an Adjunct Professor in the Department of Psychiatry and Behavioral Sciences in the Stanford School of Medicine. He has published prolifically on the topic of mental health integration and public policy. He has been featured in CNN, NBC News, USA Today, NPR, PBS News Hour and many more.
Theresa Brown, RN is the author of the New York Times bestseller The Shift and Healing: When a Nurse Becomes a Patient. She has been a contributor to the New York Times, CNN.com, the American Journal of Nursing, the Journal of the American Medical Association, and the Pittsburgh Post-Gazette. She has been a guest on MSNBC Live and NPR’s Fresh Air. Her first book was Critical Care, and during what she calls her past life, she received a PhD in English from the University of Chicago. She lectures nationally and internationally on issues related to nursing, health care, and end of life.
Michelle Litchman, PhD, FNP-BC, FAANP, FADCES, FAAN is an Assistant Professor at the University of Utah College of Nursing, Adjunct Assistant Professor of Internal Medicine, and Nurse Practitioner at the Utah Diabetes and Endocrinology Center. She serves as the Medical Director of the Intensive Diabetes Education and Support Program at the University of Utah, a multidisciplinary diabetes self-management education and support program that integrates shared medical visits.
Her NIH and foundation-funded program of research is in the nexus between diabetes, digital health, and health disparities. Her research has three overarching foci: 1) the social context of diabetes management in online (peer support communities) and family (romantic partners, parents) environments, 2) technology mediated diabetes interventions to address health disparities with an emphasis on Deaf, Hispanic, and rural communities; and 3) novel methods to examine real-world diabetes self-management. Her research focused on the underground exchange (donating, trading, borrowing, and purchasing) of diabetes medications and supplies was highlighted across national media outlets, including NPR Science Friday, CNN, and The Doctors. Dr. Litchman has worked closely with legislators and national professional organizations, where her research has influenced policies and practice.
Dr. Litchman received her research doctorate and master’s degree from the University of Utah and undergraduate degree from Weber State University. Dr. Litchman is a Jonas Scholar, Betty Irene Moore Nurse Leader and Innovation Fellow, and University of Utah Presidential Societal Impact Scholar. She has been inducted as a Fellow of the American Association of Nurse Practitioners, Association of Diabetes Care and Education Specialist, and American Academy of Nursing.
Danny van Leeuwen, Opa, MPH, RN, a two-legged cis-gender, old white man of privilege, wears many hats in healthcare. He’s known as Health Hats – an action catalyst, patient-caregiver activist, a person with disabilities from Multiple Sclerosis, care partner to several family members’ end-of-life journeys, a registered nurse for over 45 years, informaticist, and podcaster (https://www.health-hats.com/pod). Danny serves widely as a technical expert. For example, he is a National Quality Forum Patient and Caregiver Engagement advisor and serves as a member of their Standing Committee for Cost and Efficiency Measures. Danny is a member of the PCORI (Patient-Centered Outcomes Research Institute) Board of Governors. He previously served as the Vice President for Quality Management at Advocates, Inc., providing support services to individuals and families with mental illness and developmental disabilities, among other challenges, and led Boston Children's Hospital's Patient-Family Experience Initiative. He plays baritone saxophone in a Latin Band.
Tristan Bilash (he/him/human) is a clinical oncology social worker, writer, speaker, Stage 3C ovarian cancer survivor, ADHD thriver, transgender man, and inclusive health advocate. Tristan has presented at numerous provincial and national conferences in Canada, including being a keynote speaker for the Canadian Association of Psychosocial Oncology (CAPO) 2020 National Conference. As a transgender health advocate, Tristan is a national 2SLGBTQIA+ representative for the Canadian Association of Psychosocial Oncology Advocacy Committee. He is currently collaborating with the World Ovarian Cancer Coalition on their upcoming No Person Left Behind campaign to improve awareness and care for 2SLGBTQIA+ folks diagnosed with ovarian cancer. Tristan’s story is featured in the journal article, “Spare Parts: Navigating Ovarian Cancer As A Transgender Man” which Tristan co-authored with his friend and colleague, Dr. Lauren Walker (University of Calgary, Tom Baker Cancer Centre). “Spare Parts” was recently published in the Journal of Clinical Oncology (Volume 40, Issue 9) and remains free-to-access. Tristan was recently invited to write a column for the Society of Gynecologic Oncology. “When The Software Says You Don’t Exist: Creating Change As a Trans Man Navigating Ovarian Cancer” was published on SGO’s blog on June 8, 2022.
Tristan currently resides in Regina (Saskatchewan), Canada.
Links: Psychosocial Needs and Experiences of Transgender and Gender Diverse People with Cancer: A Scoping Review and Recommendations for Improved Research and Care Authors: Lauren R. Squires, Tristan Bilash, Charles S. Kamen, Sheila N. Garland LGBT Health, Volume 9, Number 1, 2022
Spare Parts: Navigating Ovarian Cancer as a Transgender Man | Journal of Clinical Oncology (ascopubs.org) Authors: Tristan Bilash BSW, RSW and Lauren M. Walker, PhD, RPsych, DOI: 10.1200/JCO.21.01249 Journal of Clinical Oncology, Art of Oncology - published online before print January 12, 2022 PMID: 35020447 1Supportive Care Department, Allan Blair Cancer Centre, Regina, SK, Canada 2Division of Psychosocial Oncology, Department of Oncology, University of Calgary, Calgary, AB, Canada 3Department of Psychology, University of Calgary, Calgary, AB, Canada
When The Software Says You Don’t Exist: Creating Change as a Trans Man Navigating Ovarian Cancer | Tristan Bilash, RSW | Society of Gynecologic Oncology (sgo.org) Author: Tristan Bilash, Society of Gynecologic Oncology - published online June 8, 2022
Social Media / Contact Personal Blog – A Cup of Strong T https://acupofstrongt.blog/ Twitter - @strongtlb1
Ashley Randolph saw a strong need to change the conversation when it comes to how Black NICU Families are treated in the NICU, at home and in school. Systemic racism is prevalent in every setting for these families and sets the stage for a vulnerable infant to grow into a child witnessing healthcare, therapeutic and educational environments that are inadequate in terms of racial and healthy equity.
Ashley Randolph: Ashley is the African-American mother of 3 preemies, founder of GLO Preemies (www.GloPreemies.org), co-Founder of the Alliance for Black NICU Families and Chair to California Perinatal Quality Care Collaborative. She is currently Mrs. America's Virtuous Woman. She is the author of her autobiography Black, Pregnant, and shamed about her experiences with her 3 high-risk pregnancies and preterm births. It is her mission to provide continuous and complete family centered care to African-American families in low income communities nationwide.
Maram is recognized nationally, locally, and statewide for her work. She received the 2019 Diversity Health Care Leader from the National Diversity Council. She was awarded the Ascendant Award from Leadership Austin. She has demonstrated community stewardship that exhibits the core values of Leadership Austin: Community Trusteeship, Inclusiveness, Collaborative Decision-Making, and Personal Responsibility. In 2016, She was presented with the Jessie A. Yoas Memorial Advocacy Award from Texas Public Health Association for her work on the Health Equity Council.
Maram Museitif strives to improve people’s lives both locally and abroad. She believes we need to deliver care from an equity lens and be the change we wish to see in the world. Ms. Museitif was appointed by Mayor Steve Adler and City Council Members in 2017 to serve on Central Health’s board of managers. She is the first Muslim Arab American health leader in Austin and appointee to the board. In her role, she manages a budget of over 300 million that is generated from property taxes, and she is entrusted with the communities’ tax dollars to provide care for the underserved Austin Travis County community. She holds herself to the highest standards in being a good steward and delivering equitable health and healthcare to those who need it most, with deep empathy and personal humility. She works collaboratively with elected officials, community leaders, and organizations across Texas to deliver valuable care and bridge public health with healthcare.
Maram is a Public health and healthcare professional with over ten years working in large research, academic, and government health settings. She has a solid understanding of healthcare delivery challenges in the United States and globally. She is also the City of Austin’s Human Rights Commissioner, where Maram Museitif works in addressing the health gaps and ensuring everyone has access to equitable health. She has been an epidemiologist working for the past year in combatting the Covid19 pandemic. She is currently a doctorate student at The University of Texas School of Public Health. Her research is focused on cancer survivorship; she holds a Master’s degree in Public Health and is certified in Public Health. She was previously the Chair of the Legislative Policy and Advocacy for the Texas Public Health Association. She prioritizes and advocates for statewide policies, programming, and funding to address public health issues. She is a public speaker, health researcher and strategist, and founding member of The Society of Health Communication. She serves on many committees the Mayor’s Institutional Racism & Systemic Inequities (IRSI) Taskforce, Eanes ISD School Safety and Health Advisory Council, Breast Health Coalition, Cancer Together Coalition, Texas Public Health Coalition, and many others.
She also worked for Yale University, University of Texas Southwestern, Department of State Health Services, The United Nations Relief and Works Agency, and the US Department of Veterans Affairs in Dallas. In addition to her work, she enjoys cooking, gardening, and spending time with her family.
Retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year hereditary colon cancer WARRIOR. My purpose is to educate the medical community about AFAP, continuing the legacy of Dr. Henry T. Lynch, on the importance of early detection in hopes of saving lives. Dr. Lynch is credited w/discovering AFAP. He's the founding father of hereditary cancer research. I met him shortly after my diagnosis and successful total-proctocolectomy surgery. Dr. Lynch considered me a colleague through the years and was tracking my journey. My mantra is a positive spin on a bleak diagnosis: Always Forge Ahead w/a Purpose!
I'm a member of the University of Michigan Genetic Hereditary Testing (MiGHT) Advisory Board and a live-case presentation for the University of Texas Health Center, San Antonio, Texas; Genetics In GI Malignancy multidisciplinary annual conferences.
Last week I was a live-case presentation for the Rutgers University NORD Students For Rare. See attached presentation.
Below are url's to my recent advocacy efforts for your reading pleasure:
USA based Colon Cancer Alliance article:
https://www.ccalliance.org/blog/prevention/dan-drydock-shockley-colon-cancer-warrior-forges-on
UK based Rare Disease article:
https://www.raredisease.org.uk/rduk-news/im-a-hereditary-colon-cancer-warrior/
USA based Vanderbilt University Medical Center, Inherited Cancer Registry (ICARE) newsletter article:
https://inheritedcancer.net/community-spotlight/
Canadian Pulse Infoframe organization:
https://t.co/LtNVLNYlWW
Harry Glorikian is a global business expert, healthcare entrepreneur, podcaster and author of The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer (Brick Tower Press, Oct. 2021). For over three decades, Glorikian has built a breadth of successful ventures in the healthcare space, and he is well known for being at the forefront of helping invest in and grow innovative healthcare companies that are tackling ground-breaking areas of healthcare and biotechnology. A sought-after speaker, Glorikian is frequently quoted in the media and regularly asked to assess, influence, and be part of innovative concepts and trends. He also holds four US patents in telecommunications and has others pending.
Glorikian currently serves as a General Partner at Scientia Ventures , a VC firm focused on upleveling companies that have the potential to transform healthcare. In particular, the firm targets businesses at the cutting edge of life sciences with an emphasis on computational biology and chemistry, the digitization of medicine and digital therapies. Additionally, Glorikian serves on the boards of StageZero Life Sciences (TSX: SZLS), a publicly traded healthcare technology business dedicated to the early detection of cancer and multiple disease states through whole blood, and Drumroll Health, which develops AI technologies to foster closer partnerships between patients, healthcare professionals and healthcare companies.
In his newest release, The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer (Brick Tower Press, Oct. 2021), Glorikian brings his learnings to the general consumer who wants to understand how all this new technology and talk of artificial intelligence can make their lives and those of their family and friends more fulfilling through better health. Glorikian walks through how readers can shape the best and healthiest version of themselves and how artificial intelligence (AI) can be a powerful tool on that journey.
Before joining Scientia Ventures, Glorikian was an entrepreneur. He grew and sold his own healthcare consulting company, Scientia Advisors, which served some of the global technology and healthcare companies in the world, many of which were on the Global 500 and Fortune 500. Glorikian also served as an Entrepreneur-In-Residence to GE Ventures – New Business Creation Group, leading to the founding of Evidation Health and DrawBridge Health. He is the author of MoneyBall Medicine: Thriving in the New Data-Driven Healthcare Market and the diagnostics textbook Commercializing Novel IVDs: A Comprehensive Manual for Success, and is the host of The Harry Glorikian Show podcast series.
Glorikian holds an MBA from Boston University and a bachelor’s degree from San Francisco State University. Harry has addressed the National Institutes of Health, Molecular Medicine Tri-Conference, World Theranostics Congress, and other audiences, worldwide. Visit https://glorikian.com/ for more information.
Alastair Santhouse is a Consultant Neuropsychiatrist at The Maudsley Hospital in London. He began his career working in internal medicine, retraining in 1996 as a psychiatrist. He worked as a consultant psychiatrist for 18 years in Guy’s Hospital, London, at the interface between medicine and psychiatry, before moving into neuropsychiatry. He is a fellow of both The Royal College of Physicians and The Royal College of Psychiatrists, and is a former President of the Psychiatry Council at the Royal Society of Medicine. Alastair is an enthusiastic teacher and communicator, and has taught medical students and junior doctors over many years. His book, Head First, was published in 2021 and is available to buy at https://atlantic-books.co.uk/book/head-first/ as well as all good bookstores.
Dr. Yan Leyfman has been recognized as one of the top international researchers in oncology by the American Society of Hematology and American Society of Clinical Oncology (ASCO). He has contributed to the development of several anti-cancer therapies that have recently entered clinical trials and new treatment recommendations of care. His successes have been recognized by the Goldwater Research Foundation, Sigma Xi, New York Times, ABC, and Harvard Medical School. During the COVID-19 pandemic, he was recruited as the Director of the Immunology Division of the Global COVID-19 Taskforce, which produced one of the first mechanisms for SARS-CoV-2, COVI-Flu, and cancer & COVID along with elucidating the mechanism of a promising cellular therapy against COVID-19 that received US FDA fast track designation in December 2020. His work has been published as the cover article in the journal, Shock, and in the textbook, Insights on a Post-COVID World. Over the past two years, Dr. Leyfman was recognized as the 2020 iCHEM Emerging International Scholar in Immunology & Immunotherapy, 2020 New York State & City Manhattan Hero, 2021 Lymphoma, Leukemia & Myeloma Congress Hero in Healthcare, and by Memorial Sloan Kettering Cancer Center for research excellence.
Dr. Leyfman also has a passion for mentorship and community service. He is a journal editor and mentor to medical students globally and gives talks about the latest innovations in medicine. Dr. Leyfman has a passion for correcting medical misinformation, medical education, and combating healthcare inequity and has co-founded MedNews Week, a global mainstream platform where he and his team puts on weekly shows and hosts Keynote Conferences by global leaders in medicine.
Karen Ranus served as Executive Director of the Austin affiliate of the National Alliance on Mental Illness (NAMI) for more than eight years until recently taking a position as Vice President of Impact for Lucero Speaks, helping launch a healthtech brand start-up focused on addressing youth mental health upstream before crisis. She sits on the Board of Directors for Austin Child Guidance Center and on Impact Austin’s Strategic Advisory Council. She has been featured in numerous publications focused on mental health policy and issues and is a frequent speaker in the community on mental health topics. As a mother of three young adult children living successfully with mental illness, she is passionate about addressing the mental health myths that keep people from getting the help and support they need to live healthy and productive lives. You can find her on: Twitter: https://twitter.com/KarenATXMH LinkedIn: https://www.linkedin.com/in/karen-ranus-75342732/ Instagram: https://www.instagram.com/karenranus/
Annie Brewster is an Assistant Professor of medicine at Harvard Medical School, a practicing physician at Massachusetts General Hospital, in Boston, a writer and a storyteller. She is also a patient, diagnosed with Multiple Sclerosis in 2001. In response to the disconnection she experienced in healthcare, both as a patient and a provider, and motivated by her belief in the power of stories, she started recording patient narratives in 2010. Integrating her personal experiences with the research supporting the health benefits of narrative, she founded Health Story Collaborative (HSC) in 2013. HSC is dedicated to helping individuals navigating health challenges find meaning, and ultimately heal, through storytelling. She is excited by interdisciplinary, cross-institutional collaborations that break through resistance to change. Annie lives in Cambridge, Massachusetts with her husband, teenagers and two dogs. She is widely published in the press and is author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss (2022).
www.healthstorycollaborative.org @HealthStoryCo
David Ross is a patient advocate and rare disease male mental mental health collaborator. David's activism began in 2017 when he was diagnosed with a rare disease called Cowden Syndrome due to being given a letter from his mother about getting tested before she passed away due to having the same condition.
After a period of coming to terms with this he became committed to raising awareness and supporting others impacted by this condition by helping set up a support group and also applying to join the Pten Foundation International Family Council which looks to helping my rare disease community by raising awareness about Cowden Syndrome. In 2020 he attended 3 virtual Eurordis rare disease schools and is currently on the Findacure mentoring program. His latest project has been to set up rare disease male mental mental health International zoom calls for patients and caregivers and has set up an online support group on facebook for males in 2021
Julia Maués was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn’t do while pregnant and discovered the cancer had spread to her brain, liver, and bones. After many treatment setbacks, her cancer began to respond to treatment. After adjusting to this new reality, she made it her mission to use this “bonus time” to make an impact in the lives of others dealing with cancer and consequently creating something positive out of a very tragic experience. She has found meaning and purpose in working with patients and researchers to make cancer research more patient-centered, innovative, and inclusive. Julia is a co-founder of GRASP, a program connecting researchers and patient advocates, and elevating patients as a critical voice in the research process as the experts in living with cancer. She’s also a member of a patient-led effort to shine a light on dosing for therapies given to metastatic breast cancer patients, therightdose.org. Lastly, Julia is very passionate about using her privilege as a white woman to work towards ending disparities for patients of color, especially Black women with breast cancer. She is a founding member of the #InclusionPledge and has pledged to not participate in advocacy initiatives, conferences, panels, projects, that don’t include the perspective of patients of color.
At age 43, Sheila Marie Johnson — a retired Air Force Senior Master Sergeant and mother of one was diagnosed with stage IV HER2-positive, hormone receptor-positive breast cancer in December of 2009. Since being diagnosed with metastatic breast cancer, Sheila has undergone many aggressive treatments including a bilateral mastectomy and many rounds of chemotherapy.
She is an alumnus of A Fresh Chapter with trips to India and Kenya and is a Young Advocate for Living Beyond Breast Cancer Young Women's Initiative Program. Sheila is a consumer reviewer for the Department of Defense Breast Cancer Research Program and METAvivor, where she reviews proposals for funding and she is a member of the Patient Insight Board for Medidata.
Sheila is a facilitator and a Board Member for Breast Cancer Recovery and a 2020 participant in the Escape to Thrive Leadership Conference. She's a Komen Scholar and on the Komen Advocates in Science Steering Committee.
Sheila is featured in a Pfizer documentary called A Story Half Told and featured in Breast Cancer Wellness Magazine. Her platform raises awareness about black breast cancer and the health/racial disparities that exist against black women/men in the medical community. She dedicates her life’s mission to her mother and father, Dillard and Grace Johnson.
John-Manuel Andriote has written about health and medical issues since the mid-1980s. He has specialized in reporting on HIV-AIDS since earning a master’s degree in journalism from Northwestern University in 1986. Kirkus Reviews called his award-winning University of Chicago Press book VICTORY DEFERRED: How AIDS Changed Gay Life in America “the most important AIDS chronicle since Randy Shilts’ AND THE BAND PLAYED ON.” Andriote has served as a communication consultant for U.S. government public health agencies, and as an adjunct university communications and journalism instructor. A man of many interests, Andriote’s other books include HOT STUFF: A Brief History of Disco; THE ART OF FINE CIGARS; TOUGH LOVE: A Washington Reporter Finds Resilience, Ruin, and Zombies in His ‘Other Connecticut’ Hometown; WILHELMINA GOES WANDERING, “a fable for kids ages 5 to 105,” based on the true story of a runaway cow in Connecticut; and, most recently, STONEWALL STRONG: Gay Men’s Heroic Fight for Resilience, Good Health, and a Strong Community. Andriote since 2017 has written the “Stonewall Strong” blog on resilience for Psychology Today magazine. He has been a frequent guest speaker, expert news source, guest writer, and patient advocate since “coming out publicly” about his 2005 HIV diagnosis. In 2021, Andriote relocated from his native state of Connecticut to Atlanta, Georgia, where he holds a full-time position as senior writer for Winship Cancer Institute of Emory University.
Gabe Charbonneau, MD is a rural family physician and high-tech entrepreneur. He is the co-founder of Fluent Systems, an EHR automation software company. He serves as EHR faculty at Practicing Excellence, and has been a physician advisor to the AI scribe companies, Tenor and Saykara. He is also the passionate creator of the #FightBurnout movement on social media, and FightBurnout.org. Gabe lives and practices in Stevensville, Montana.
Cynthia lives in Lawrenceville, NJ with her husband John. She attended Rutgers University graduating with degrees in Psychology and Education. Upon graduation she secured her first teaching position and immediately fell in love with her chosen profession. Cynthia continued teaching for 28 years.
Cynthia, a myeloma survivor, was forced to retire from her beloved teaching career when a stem cell transplant failed to put her cancer into remission. Now retire, she is using her passion for education to teach a new group of "students" - myeloma patients and their caregivers. Using social media to educate is her passion. Cynthia educates and advocates by tweeting @MyelomaTeacher and sharing myeloma resources, educational opportunities, and clinical trial information on her MyelomaTeacher Facebook page. She is the curriculum director of the Myeloma Crowd’s HealthTree University for Myeloma- a free online myeloma education course. https://healthtree.org/myeloma/university Ms. Chmielewski is also a regular patient panelist on CureTalks Podcast.
Cynthia sits on the advisory boards of the Patient Empowerment Network, the Myeloma Crowd Research Initiative, and several pharmaceutical companies. Cynthia was an invited panelist and presented posters on using social media in hematology at the annual meetings of the American Society of Hematology (ASH), the American Association for Cancer Research (AACR) and the European Bone Marrow Transplant (EBMT). Additionally, Cynthia is also a member of the Patient Engagement team at Patient Power-A Remedy Health Company.
Ms. Chmielewski enjoys serving as a voting member on the IRB at the University of Pennsylvania, a peer reviewer for the National Cancer Institute’s (NCI) Division of Extramural Affairs and Department of Defense’s CMCRP grant programs. Ms. Chmielewski is a patient advocate on the myeloma steering committees of the NCI and the Academic and Cancer Research United (ACCRU.) More recently Cynthia was asked to serve as a patient advocate on the Mayo Clinic’s Myeloma SPORE. She is also the patient advocate on several research grants. Cynthia serves as a community member on the Rutgers-Cancer Institute of NJ’s Community Cancer Action Board and Mt. Sinai’s Cancer Care Accelerator Group.
Patient Advocate, Interdisciplinary Artist, Innovation Consultant Devoted to Connection and Repair.
Liza Bernstein, a Third Culture Kid who is NED (No Evidence of Disease) after three cancers is a patient advocate, interdisciplinary artist, and innovation consultant devoted to connection and repair.
Liza Bernstein's advocacy serves a global audience via social media, conference attendance, speaking and media engagements, peer mentoring, and relationship-building. She also collaborates, co-designs, and advises across the multi-stakeholder healthcare spectrum to break down silos, foster understanding, promote education and empowerment, and accelerate change.
In late 2010, Liza began to explore the worlds of breast cancer and healthcare innovation on Twitter and never looked back. Her work at the intersection of healthcare innovation, technology, and human-centered design has made impact at groundbreaking companies and organizations including Cure Forward, Science 37, CanSurround, Symplur, Medidata, Omicure, and BioNews. Liza's background in human-centered design includes projects with RGA/LA, IDEO, Bruce Mau, and Medicine X Design Studios.
A Stanford Medicine X founding ePatient scholar, advisor, and former board member, Liza has given talks internationally on topics including Patient-Centered Design; Dignity in Healthcare; Mental Health and Cancer; Death and Bereavement; Social Media and Patient/Clinician Relationships; and Shared-Decision Making.
Liza, who is also an interdisciplinary artist (ceramics, Capoeira Angola, writing), is a TCK (Third Culture Kid) who grew up in South Africa, France, and the US. She is passionate about connecting and collaborating across vastly differing cultures and digs deep into her life experience and expansive creative training to do whatever it takes to facilitate understanding and communication—she’s no stranger to improv, which has the added benefit of yielding lots of laughs.
Recently, Liza executive produced, directed, and hosted A Window Into Rare, Rare Disease Day Panel Discussion at BioNews, where she was the Senior Director of Patient and Community Engagement. She is currently preparing a talk on Innovation in Surgery from the Patient Point of View for the Inworks Innovation Initiative, University of Colorado Anschutz Medical Campus.
At age 43, Sheila Marie Johnson — a retired Air Force Senior Master Sergeant and mother of one was diagnosed with stage IV HER2-positive, hormone receptor-positive breast cancer in December of 2009. Since being diagnosed with metastatic breast cancer, Sheila has undergone many aggressive treatments including a bilateral mastectomy and many rounds of chemotherapy.
She is an alumnus of A Fresh Chapter with trips to India and Kenya and is a Young Advocate for Living Beyond Breast Cancer Young Women's Initiative Program. Sheila is a consumer reviewer for the Department of Defense Breast Cancer Research Program and METAvivor, where she reviews proposals for funding and she is a member of the Patient Insight Board for Medidata.
Sheila is a facilitator and a Board Member for Breast Cancer Recovery and a 2020 participant in the Escape to Thrive Leadership Conference. She's a Komen Scholar and on the Komen Advocates in Science Steering Committee.
Sheila is featured in a Pfizer documentary called A Story Half Told and featured in Breast Cancer Wellness Magazine. Her platform raises awareness about black breast cancer and the health/racial disparities that exist against black women/men in the medical community. She dedicates her life’s mission to her mother and father, Dillard and Grace Johnson.
Deb Discenza is a mother to a 30-week preemie now 18 years old, Founder of PreemieWorld, Co-Founder of the Alliance for Black NICU Families and Founder of Crystal Ball Health.
Dave Craig is a two-time cancer survivor, oncology researcher and patient experience champion. After 10 years of struggling to see his own cancer journey in the patient experience research he led for the pharmaceutical industry, he left to use his survivor heart and researcher brain to help other patients. In 2016, he co-founded GRYT (“grit”) Health, a patient-centered health company that puts people, rather than disease, at the heart of research and innovation to advance science. At GRYT Health, he and his team of fellow survivors and caregivers, use their personal health experience and healthcare expertise to improve outcomes for all people facing a diagnosis through a relentless focus on patient experience.
Dr. Jones is an assistant professor in the Cancer Prevention Program, Public Health Sciences at Fred Hutchinson Cancer Research Center. She has a Doctor of Philosophy degree in psychology from the Ohio State University and completed post-doctoral training in aging and women’s health research at Group Health Research Institute (now Kaiser Permanente Washington Health Research Institute). Dr. Jones is a clinical psychologist and psychometrician who studies financial hardship, financial anxiety and health. She is also working on creating patient-centered methods of determining meaningful change on patient-reported outcomes and developing measures to improve implementation of evidence-based practice. Her previous studies have investigated fear of cancer recurrence/progression and the relationship between physiological markers of health and distress.
Rene Morales is patient advocate for Trigeminal Neuralgia (TN), a rare chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. TN pain is exceptionally severe and at one time was referred to as the “Suicide Disease” because those with TN would rather end their life than live with the pain associated with the condition. Diagnosed in 2018, Rene initially struggled with depression and isolation that affected not only his life, but those who surrounded him. Faced with a choice of continuing down the dark road of depression, or pull himself out of the downward spiral he had created, Rene started his journey to return to the person he was prior to his diagnosis with a renewed sense of purpose.
To serve as a role model to others, Rene has shared his story of adversity through a variety of platforms to include motivational speech and storytelling, written essays, podcasts, and can be seen in the award winning “Unfixed” docuseries and in the upcoming feature documentary film “Why We Matter”.
What Living with Trigeminal Neuralgia Taught Me (And How It May Help You) — Health Story Collaborative Docuseries — unfixed (unfixedmedia.com) Why We Matter - Rene - YouTube
Julie Flygare, J.D., is a leading ambassador for narcolepsy and sleep, and a strong advocate for patient-centered research and the importance of social support. She is an accomplished speaker, Stanford Medicine X ePatient Scholar, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. As President & CEO of Project Sleep, Julie leads the organization’s patient-driven advocacy, awareness, and education programs. For over a decade, she has fostered a variety of successful collaborations including bringing together 29 patient advocacy organizations to co-lead World Narcolepsy Day and launching the Sleep Advocacy Forum to elevate the sleep community's profile on the national policy stage. Julie has lectured at numerous professional meetings across the U.S. and keynoted conferences in Ireland, Italy, Sweden, Australia, and the United Kingdom. She has co-authored papers in peer-reviewed publications and authored a chapter in a narcolepsy clinical textbook. Julie received her B.A. from Brown University and her J.D. from Boston College Law School focusing on health law and rare disease drug development.
Wide Awake and Dreaming: A Memoir of Narcolepsy: Julie Flygare's website: http://julieflygare.com/
Project Sleep's website: https://project-sleep.com/ Project Sleep's Instagram: @project_sleep https://www.instagram.com/project_sleep/?hl=en Project Sleep's Facebook: https://www.facebook.com/ProjectSleepAwareness Project Sleep's Twitter: @project_sleep https://twitter.com/project_sleep Project Sleep's YouTube: https://www.youtube.com/c/Project-sleep
Julia Maués was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn’t do while pregnant and discovered the cancer had spread to her brain, liver, and bones. After many treatment setbacks, her cancer began to respond to treatment. After adjusting to this new reality, she made it her mission to use this “bonus time” to make an impact in the lives of others dealing with cancer and consequently creating something positive out of a very tragic experience. She has found meaning and purpose in working with patients and researchers to make cancer research more patient-centered, innovative, and inclusive. Julia is a co-founder of GRASP, a program connecting researchers and patient advocates, and elevating patients as a critical voice in the research process as the experts in living with cancer. She’s also a member of a patient-led effort to shine a light on dosing for therapies given to metastatic breast cancer patients, therightdose.org. Lastly, Julia is very passionate about using her privilege as a white woman to work towards ending disparities for patients of color, especially Black women with breast cancer. She is a founding member of the #InclusionPledge and has pledged to not participate in advocacy initiatives, conferences, panels, projects, that don’t include the perspective of patients of color.
Lara manages coordinated medical collaboration, raising funds for research, and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. Commemorating ten years in the field of patient advocacy, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.
Lara’s Socials:
Website : https://protect-au.mimecast.com/s/8GvVCBNqnLiVGkQDtzetCj?domain=larabloom.com/ Facebook: https://www.facebook.com/larabloomeds Twitter: https://twitter.com/larabloomeds YouTube : https://www.youtube.com/larabloom Instagram : https://www.instagram.com/lara.bloom/
Leah Barett, MS, LCSW is a Psychotherapist and Nutritionist in Private Practice in Colorado. That is what she does, not who she is. She is a philosopher, nature-lover, sunset chaser and lover of beauty which she strives to see even in the darkest of places. She has a Ph.D. in being human which she gained from living with end-stage ovarian and breast cancer.
Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis. She was diagnosed at 18 months old and has experienced countless hospitalizations since being a child. She has committed her time to empowering patients and advancing research and healthcare strategies through her connections with researchers, pharmaceutical companies, and patient organizations. She is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections and speaks publicly at conferences, meetings, and to companies about the value of patient perspective. She also has a passion for writing; distilling clinical information for patient communities, and sharing about the hardships yet triumph that comes with living with a chronic illness. She has been published in journals, news sites, and blogs. Through opportunities working with healthcare organizations and sharing her journey through content strategy, writing, public speaking, clinical trial development, and sharing the patient experience she aims to affect the healthcare landscape by raising awareness of rare diseases, promoting self-advocacy to patients, and valuable insights to organizations. More of her work and experiences can be found at www.ellabalasa.com.
C. Glenn Begley MBBS (MD-equivalent), PhD, FRACP, FRCPA, FRCPath, FAHMS is a physician and hematologist/medical oncologist, with a PhD in cell and molecular biology.
He currently serves as an independent biotechnology consultant, and is Head of Biology at California-based BridGene Biosciences, and co-Founder and Head of Discovery at Boston-based Parthenon Therapeutics.
For 4 years, until March 2021, he served as inaugural CEO of BioCurate, a joint startup initiative of Monash and Melbourne Universities. Prior to that he served as Chief Scientific Officer at Akriveia Therapeutics (now Xilio), California (2016-2017), and TetraLogic Pharmaceuticals, Pennsylvania (2012-2016). He also served as non-Executive Director at Oxford BioTherapeutics (2012-2017) and several other biotech companies in the USA. He was Vice-President and Global Head of Hematology/Oncology Research at Amgen, Thousand Oaks, California (2002-2012), with responsibility at Amgen’s 5 research sites. His scientific responsibilities included Amgen marketed products (filgrastim, pegfilgrastim, erythropoietin, darbepoetin alpha, palifermin, ancestrim, romiplostim, denosumab). Over 25 clinical-stage molecules emerged from his group including fully human monoclonal antibodies, small molecules, protein ligands, antibody-drug conjugates. He was also the internal oncology advocate for in-licensed molecules including, the bi-specific T-cell engager (BiTE) blinatumomab, and the oncolytic virus talimogene laherparepvec (T-Vec).
While at Amgen he highlighted the issue of research integrity and scientific reproducibility. He has made multiple presentations on this subject including to President Obama's Science Council, the White House, US National Institutes of Health, US Academies of Science, US National Institute of Standards and Technology, Wellcome Trust, NHMRC, and numerous Universities, Research Institutes and companies. Prior to Amgen, he had over 20 years of clinical and research experience in medical oncology/hematology. His early research first described human G-CSF. In later clinical studies he first demonstrated that G-CSF-"mobilized" blood stem cells hastened hematopoietic recovery compared with bone marrow transplantation (so called "stem cell transplantation").
His honors include being elected as the first Foreign Fellow to the American Society of Clinical Investigation (2000), the Association of American Physicians (2008), to the Research "Hall of Fame" at his alma mater, the Royal Melbourne Hospital (2014), to the Australian Academy of Health and Medical Sciences (2014).
He has published over 200 papers that have been widely cited (~25,000 citations; h-index 77; i10-index 188, source Google Scholar, August 2020). His TED-x seminar “The Complex Biology of Cancer” has >100,000 views.
Ace Robinson is a leading administrative and policy Communicable Disease advocate and population health expert. He serves communities disproportionately impacted by HIV, COVID-19, tuberculosis, malaria, and associated illnesses. Ace currently serves as the Chief Mission Officer at the Covid Clinic, a national non-governmental organization created in response to the global pandemic.
Robinson acts as the chair for the Federal AIDS Policy Partnership (FAPP); serves on the board for the Economic & Policy Impact Center (EPIC) focused on leadership development for BIPOC; serves as the chair on the Brown University Advisory Council to Eliminate Anti-Black Racism; and sits on the UCLA Center for HIV, Identification, Prevention & Treatment (CHIPTS) steering committee.
Prior to Covid Clinic, Ace served in senior leadership roles at the National Minority AIDS Council (NMAC) in Washington, DC, Gay Men’s Health Crisis (GMHC) in New York City, David Geffen School of Medicine at UCLA (Los Angeles), Partners in Health in Haiti, and the Desmond Tutu Health (formerly HIV) Foundation in Cape Town, South Africa. Robinson holds a master's degree in healthcare leadership from Brown University, a master's degree in public health from the University of Cape Town, a bachelor’s in chemistry from Duke University.
Aubrey is a patient advocate for TTR Amyloidosis, a rare condition for which he was diagnosed in 2013 with the hereditary type strain. Aubrey takes pride in providing support to other amyloidosis patients despite the trauma and challenges he faces as a sufferer. His extraordinary commitment to making a positive change in diagnosis and treatment allows him to take the focus away from his pain and turn it into something that would benefit others. Patient engagement and voice in healthcare, research, and social welfare are areas that need improvement. There has never been a more critical time for patients like him to advocate and play their part in driving change.
When Effie’s son, Ford, was born with an extremely rare genetic condition called CTNNB1 syndrome, she dove headfirst into the world of advocacy. CTNNB1 syndrome is caused by a deletion, partial deletion, or mutation of the CTNNB1 gene. It is a neurological condition that can cause a range of symptoms from mild developmental delays to severe physical and intellectual disabilities. To help herself and others cope with and manage raising a child with a disability or rare genetic condition, Effie started the Once Upon a Gene podcast. She shares her personal stories and interviews other parents, patients, advocates, doctors, scientists, and more.
I was born with PFFD (proximal focal femoral deficiency) in 1976. At the time, there were only 12 other documented cases in the world.
At 2, we moved to the US to give me the best chance to live out my potential. I had years of physical therapy and terrific doctors, who helped set the groundwork that I could build on.
My parents fought to get me into regular schools, where I learned how to adapt to the world around me, make friends, and start fostering my resilience.
I have two degrees from the University of Chicago and a law degree from George Washington. My academic life taught me critical thinking and the power of ideas to change ourselves and the world around us.
As I grew older, the entrepreneurial world called to me. It was a place where I could build something bigger than myself and test my resilience, problem solving, and adaptation skills while also creating a company I would be happy to work for. 15 years later, my company is thriving and growing.
More recently, I started a podcast called Enabled Disabled in order to empower people with a disability to share their stories and their adaptations. The purpose is twofold: we want to change the hearts and minds of the non-disabled and shine a light on our potential, and just as importantly, we want to dive into our vulnerabilities as people, with the hope that we find more strength in ourselves and each other.
Joe Sooch here. I have a rare disease called FOP where my muscles turn into bones literally I was born with all my limbs working normally with free range. As I get older, I’ll get swellings all over my body and bones just start forming the bones grow and locks my body into place permanently. I can get surgery or more bones will grow. My DNA is faulty so there is nothing any doctor can do to help. I am stuck like this permanently and just have to deal with it.
https://www.instagram.com/joeysooch/
https://www.youtube.com/watch?v=_5P2U05uTfY&t=524s
Wedding vlog
https://www.youtube.com/watch?v=L-JLGt1R_RA&t=496s
Follow me on instagram!
https://www.instagram.com/joeysooch/
Proof https://www.instagram.com/p/CSzILlaLhor/?utm_source=ig_web_copy_link
More proof https://imgur.com/a/8fTzUcZ
https://www.dailymail.co.uk/video/health/video-1165043/The-boy-turning-stone-The-story-Joey-Sooch.html
Michelle and Tracy have been interprofessional leaders, friends and colleagues for over 30 years. They are co-hosts of a top healthcare leadership podcast, Healthcare’s MissingLogic Podcast.
Michelle and Tracy have a combined experience of more than 60 years working as consultants and coaches for healthcare organizations across North America supporting healthcare leaders as they strive to create healthy, healing work cultures. They frequently speak at national and international leadership conferences on the topics of managing healthcare polarities, achieving work life balance and living a resilient life.
MissingLogic was recently featured on CNBC for their work with healthcare organizations and their Healthy Healing Organization (H2O) Framework™. Michelle and Tracy have also developed the Dynamic Balance Effect™ (DBE) Framework to help healthcare leaders experience joy, live with intention and be their best self at work and at home. The DBE Framework provides the foundation for their numerous healthcare leader group-coaching programs. WEBSITE LINK: https://www.missinglogic.com/ SOCIAL MEDIA LINKS: https://www.linkedin.com/company/missinglogic-llc https://www.facebook.com/missinglogicLLC https://twitter.com/MissingLogicLLC https://www.instagram.com/missinglogic_llc/
Mary Donovan is the Assistant Dean for Standardized Patients (SPs) & Experiential Learning at Georgetown University School of Medicine in Washington, DC. She has served at Georgetown as administrative director and educator for the Integrated Learning and Simulation Center since 2007, providing medical students with clinical learning and assessment opportunities through SP education and simulation. These methodologies use professionally trained actors, retired teachers and others to portray specific patients and families in a broad spectrum of healthcare experiences for learners – a safe space to develop clinical and communication skills and receive feedback from the patient perspective. Prior to Georgetown, she held a faculty position as senior SP trainer at Uniformed Services University of the Health Sciences, and as academic-affairs staff at Johns Hopkins Medical School. Prior to her work in med-ed experiential learning, she managed a forum of women in international trade and diplomacy, taught as adjunct faculty on Georgetown’s main campus in the mid-90s, served as marketing manager for a B2B organization, and as chapter liaison for a national trade association. In the early days of online journal search-and-retrieval and library automation, she worked as a researcher at the National Library of Medicine, Library of Congress and other libraries. While in college and beyond, she worked for the UVa Hospital Education system, teaching children with disabilities from birth to age 21. Mary presented (virtually) at the Ottawa Conference in Kuala Lumpur, Malaysia, as a finalist for the IMU-RHIME Award for Innovation in March of 2020, and won an innovation award for her presentation at the international Association for Standardized Patient Educators in 2011. From 2016-18 she served as Chair for the Mid-Atlantic Consortium of med-school clinical-skills programs. In 2016, GUMC honored her as a “bridge-builder” in the Ongoing Engagement and Consultation initiative. She recently joined the editorial board for the Journal of Health Design, published in Melbourne, Australia. She joined the Screen Actors Guild in 1999; speaking roles to-date have landed on the cutting-room floor, but she (or her old Honda Civic) can be seen as background in various TV and film productions. Mary’s artwork has sold in art fairs and hospital exhibitions, and through personal commissions. Her days as a publically performing singer and guitarist are largely in the past, but she dreams of resurrecting half-written original songs someday. Other work that will never retire – writing short stories, children’s books, a memoir, a novel and personal essays. Meanwhile, she launched a blog/website in early 2021: marymuffindonovan.com She received her BA in English from the University of Virginia, MA in Liberal Studies from Georgetown University and MFA in Writing from Vermont College of Fine Arts. Twitter: @marydonobird Instagram: @maryfdonz Facebook: /mary.donovan.75457 Website: marymuffindonovan.com
In 2018 Brad Power was a process innovation researcher and consultant with over 35 years experience and an author of over 75 articles for the Harvard Business Review when he was diagnosed with lymphoma. Brad went through a standard course of chemotherapy, which was successful, and he currently has no evidence of disease. While attending a conference on personalized medicine at Harvard Medical School, he spoke up to provide his experience as a patient, and was told in the breaks afterward by many attendees that he had a voice. He felt this must be his calling, and he decided to focus his skills and experience on accelerating innovation in cancer treatment. Because of his experience in working with large, successful companies, he was skeptical that incumbents would drive the big, disruptive process changes as fast as patients need. He decided to do what he could to help (1) patients that actively engage in solving their problems and make them available to others, and (2) startups that are disrupting the health system to help patients get educated, navigate, and form community. In late 2020 Brad was talking to his friend Bryce Olson, who said he had hit a wall in keeping his metastatic prostate cancer at bay. Brad suggested to Bryce that they could run a hackathon (a collaborative effort of a diverse crowd of experts) for him to find his best next treatment option, which they did from December 2020 to March 2021. Brad is currently hosting two hackathons: one for Linnea Olson, a lung cancer patient, and another for Kasey Altman, a young woman with a rare cancer. Brad hopes to make hackathons available to many more patients who are facing complex treatment decisions. Brad is a founding member of Ennov1; an advisor to Alva10, Blue Note Therapeutics, Cancer101.org, and Rabble Health; and is an active contributor to the Personalized Medicine Coalition.
Nikki Montgomery is the executive director of Madvocator Educational & Healthcare Advocacy Training and the author of the Super Safe Kids patient safety book series. Nikki is a patient advocate, a former hospital Board member, and the past president of the Patient and Family Partnership Council at University Hospitals Rainbow Babies & Children’s Hospital in Cleveland, Ohio. She is also the project coordinator for The Beryl Institute’s Patient Experience Policy Forum (PXPF) and serves on the Global Patient and Family Advisory Board. As the parent of a child with complex medical needs, and a person with chronic health issues of her own, Nikki has spent lots of time in healthcare settings and is interested in improving equity, engagement and communication with patients.
Her paper in the Journal of Health Design is here: https://www.journalofhealthdesign.com/JHD/article/view/136
Gunnar Esiason is a cystic fibrosis and rare disease patient leader, who is passionate about early stage drug development, patient empowerment and health policy. He is a Master of Public Health candidate at the Dartmouth Institute for Health Policy and Clinical Practice. Gunnar holds an MBA from the Tuck School of Business at Dartmouth and a BA from Boston College.
Gunnar worked on an enteral feeding product at a medical nutrition company, was appointed to the board of directors at the Boomer Esiason Foundation, and was the head coach of his high school alma mater’s varsity hockey team. Gunnar maintains the Chief Strategy Officer & Director of Advocacy at the Boomer Esiason Foundation where he manages the organization’s strategic philanthropy fund. He also serves on the board of No Patient Left Behind, a non-profit organization whose goal is to lower out of pocket costs for patients.
He has consulted on clinical trial development, population health studies, and a cystic fibrosis-specific mental health and wellness screening tool. In 2019, Gunnar delivered the pre-commencement address at the St. Louis University School of Medicine commencement exercises. He has also been featured as a keynote speaker at more than two-dozen top medical centers, biotech conferences, and health industry events across the United States. His health policy opinions have been featured in USA Today, The Wall Street Journal, STAT News, Newsweek, The Hill, RealClear Politics and Morning Consult. Gunnar also recently published a white paper documenting the antibiotic market dysfunction as a barrier to future drug development with the Pioneer Institute in Boston, MA. Gunnar lives in Hanover, NH. Follow him on Twitter @G17Esiason or check out his blog at www.GunnarEsiason.com
Jamia is an educator, a connector, an advocate, as well as a “doer”. She is also a Multiple Sclerosis patient, national speaker, and blogger; is often regarded as a healthcare innovator with a keen desire to design a truly patient centered healthcare model that includes a leveled playing field.
In her new role as CEO of Families Forward Virginia, she is an innovator with a keen desire to design a truly family –centered model of well-being that includes a level playing field. Jamia has shared that it’s her personal mission to empower families in Virginia to become stakeholders in their own success. By providing prevention, education, resources, tools and access to wrap-around services, it’s her hope that together we can develop sustainable, healthy families two generations at a time.
Jamia has shared that she believes a good laugh, a listening ear and an open heart cure everything. She also believes that hard work and sacrifice are always rewarded, that a leader can do nothing without a team, and that when your passions align with your life purpose, great achievements can be made.
Sneha graduated from Indiana University in May 2020 where she majored in chronic illness advocacy as well as journalism. She created the Health Advocacy Summit (HAS) and its program the Crohn’s and Colitis Young Adults Network (CCYAN) with support from foundations such as the Helmsley Charitable Trust to create support systems for adolescents and young adults with chronic medical disabilities across the U.S. and internationally. She is proud to work with a team composed entirely of young adults with chronic medical disabilities and also to keep the HAS and CCYAN and independent from the pharmaceutical and insurance industries.
Sneha has completed an undergraduate research fellowship in health policy at Harvard T.H. Chan School of Public Health. She has also interned at numerous places such as Pfizer Global Headquarters in health economics and outcomes research for Inflammation and Immunology. Sneha has spoken on Capitol Hill, featured nationally on C-SPAN, and is a past contributor for U.S. News and World Report. She has served on the Democratic National Committee Disability Policy Subcommittee and recently joined the Midwest Comparative Effectiveness Public Advisory Council, an independent appraisal committee of the Institute for Clinical and Economic Review. Sneha was awarded two academic fellowships with the Association of Health Care Journalists. She was previously a national policy fellow at RespectAbility and now serves as the youngest director on the board for the national nonprofit. Sneha has spoken at the Democratic National Convention, Stanford Medicine X, the National Academies of Medicine, and other major avenues. For her work, Sneha was selected as one of the most influential teenagers in 2018 by the We Are Family Foundation and was recognized as an American Association of People with Disabilities Emerging Leader in 2020.
Shazia Ahmad, Senior Director, Head of Patient & Physician Services at UBC, earned a B.S. in physiology and neurobiology from the University of Maryland and has 20+ years of experience in the therapeutic development industry. Shazia is a seasoned thought leader in the rare disease space with a passion for ensuring the patient journey and diagnostic experience is implemented in every program she develops. Shazia has also served as a study coordinator at the National Institutes of Health (NIH). While at the NIH, Shazia coordinated intramural clinical trials across the various institutes, including the National Institute of Allergy and Infectious Diseases (NIAID), National Institute of Neurological Disorders and Stroke (NINDS) and the National Cancer Institute (NCI).
Shazia is a thought-leader in patient advocacy, with a desire to improve healthcare and integrate successful solutions that bring optimal access and diversity to clinical trials. Shazia serves as a Board Advisor on the HPV Alliance, a non-profit organization that helps to advance the prevention of HPV-related cancers through education, advocacy and research.
Her passion for the diverse people of the rare disease community continues to drive her work though the implementation of patient advocacy initiatives.
Connect with her on LinkedIn: https://www.linkedin.com/in/shaziakahmad/
Follow her on Twitter at: @ShaziaKAhmad
Elizabeth Jameson is an artist and writer who explores what it means to live in an imperfect body as part of the universal human experience. Before her diagnosis of multiple sclerosis, she served as a public interest lawyer representing incarcerated children; she later represented children living with chronic illnesses and disabilities in their attempts to receive medically necessary care. As her disease progressed, she began using her MRI’s to create art as a way of reclaiming agency of her own medical data. She transformed the unsettling, clinical images into work that invites people to open up conversations about what it means to have an illness or disability. Her work is part of permanent collections both nationally and internationally, including the National Institutes of Health, major universities, and medical schools. She now writes personal essays and speaks across the country sharing her experiences living with illness and disability. Her essays have been published by The New York Times, British Medical Journal, WIRED magazine, and MIT’s Leonardo Journal "Intimate Visions: Representations of the Imperfect Body in the Age of Digital Medicine". Her essay, “Losing Touch, Finding Intimacy,” was included in the New York Times book, About Us, released in September 2019 by Norton Publishing. She published a second article in the New York Times titled "To Feed Me Is to Know Me". Many of her lectures at medical schools and symposiums have been recorded and shared, including her Stanford TedX talk, “Learning to Celebrate and Embrace Our Imperfect Bodies.”
Cynthia Ryan is the Executive Director of the Vestibular Disorders Association (VeDA), the leading international organization people turn to for help with vestibular (inner ear and brain) disorders. VeDA helps people with vestibular disorders by connecting them to health care specialists and support networks. VeDA promotes awareness for vestibular disorders through testimony and advocacy.
Balance is easily taken for granted. However, when the fragile vestibular organs of the inner ear and brain are damaged by illness or injury, anyone can lose the ability to balance—not just physically, but the demands of school, work, family and independent living. These profound impacts are often made worse by the disorder’s invisibility to others and the extended amount of time it takes to get an accurate diagnosis.
More than 35% of U.S. adults 40 and older (69 million people) experience vestibular dysfunction at some point in their lives; many of them go on to develop a chronic vestibular disorder. For almost 30 years, VeDA has been a highly respected source of scientifically credible information on vestibular disorders. Through our publications and online community, VeDA has reached literally millions of vestibular patients with critical information and support.
Dr Gyles Morrison is a Clinical User Experience Specialist and Digital Health Consultant, improving the usability, accessibility and satisfaction people have with healthcare technology. He uses knowledge and experience of behaviour change to improve the way technology is successfully used in healthcare. He has worked with the NHS and a variety of healthcare companies in the UK, South Africa and America on digital healthcare products including Electronic Patient Record systems, remote monitoring tools and digital therapeutics.
Johan is an extroverted, loving , family guy. When Johan turned 33 years old his world was turned upside down. Before his illness, Johan felt like he was on top of the world. He had a successful career, had just bought a house, and was planning a wedding with the love of his life. Then, on April 18th, 2019, he woke up and the world was spinning. His symptoms included head pressure, ear fullness, neck pain, dizziness, loss of balance, and visual disturbances such as light sensitivity and inability to focus. After many doctor appointments with specialists, and numerous tests, he received a diagnosis of Vestibular Migraine and Persistent Postural Perceptual Dizziness (PPPD. Now, almost two years later, Johan is learning to thrive and live his life, thanks to some much needed adjustments, such as diet changes, exercise, vestibular rehabilitation therapy, supplements and medication. Johan started a YouTube channel (“Find your Chappiness”) and hosts a show called Vestibular TALKS, which has over 50 episodes with a variety of guests who have been kind and brave enough to open up and share their journeys, raise awareness, and inspire others living with chronic illnesses. Johan is a VeDA ambassador and he hopes to continue raising awareness and provide a positive outlet for others to share their journeys and connect with our wonderful community of Vestibular Warriors.
Dr. Ankita Sagar is an Internist, Primary Care Physician. She is an Associate Professor of Medicine at the Zucker School of Medicine at Hofstra/Northwell. She is the Director of Ambulatory Quality for the Medicine Service Line and currently serves as the Director for the COVID Ambulatory Resource Support Program at Northwell Health. She a member of the Council of Early Career Physicians of American College of Physicians, as well as Chair of the Early Career Taskforce for the NY chapter of American College of Physicians. She has gained recognition in the areas of public policy, advocacy, amplification of women in medicine, and physician well-being. She lives in Brooklyn, NY with her husband and dog.
Rob Andrews is an Associate Professor at the University of Exeter, an Honorary Consultant Physician at Musgrove Park Hospital Taunton and a Danish Diabetes Academy visiting Professor.
At the University Rob he leads a group that conducts clinical trials to determine how best to help people with type 1 and type 2 diabetes to improve their diets, increase their activity levels and to lose weight. Past studies include the long-term effects of diet and diet and exercise interventions in patients with newly diagnosed Type 2 Diabetes (ACTID follow up); the role that sedentary time has in the metabolic characteristics of patients with Type 2 diabetes (STAMP 2); how exercise can affect beta cell function in Type 1 diabetes (EXTOD). and development of education programme for people with Type 1 diabetes (with accompanying training for health care professionals to deliver this programme) to guide insulin and carbohydrate adjustment for safe exercise (EXTOD education).
Ongoing studies include; EXTOD education online a study that adapt the EXTOD education programme to an online programme; EXTOD education Denmark a study that aims to culturally adapt the EXTOD education programme so it can be used in Denmark; EXTOD adolescents a study that aims to develop an education programme to help encourage and support exercise in adolescents with Type 1 diabetes; ByBandSleeve the largest bariatric surgical RCT in the world which aims to determine the best operation for treating patients with morbid obesity and MOTIVATE T2D a study that aims to determine the best ways to remotely support people with newly diagnosed type 2 diabetes to increase their everyday physical activity to improve their diabetes control.
At Musgrove Rob leads the diabetes Research team and is the Clinical lead for one of the largest multidisciplinary weight management services in the UK. As as well as doing regular Diabetes and obesity clinics he runs specialist adult, adolescent and paediatric sports clinics to give advice to sports men, women and children who have Type 1 diabetes.
Leah Barrett is a Licensed Clinical Social Worker and Master’s Level Nutritionist and has been Private Practice for 25 years. She also has worked in medical settings, specifically oncology as well as consulting for nonprofits and teaching at Colorado State University’s School of Social Work. Most recently, Leah has been living with advanced breast and ovarian cancers - the biggest teachers of her life.
For Rebecca Trahan, the art of communication is a subtle one. Her clean designs communicate client messages clearly, with a simple elegance. In 1994 she established her award-winning communications firm Barking Dog Design, along with her not-so-silent partner, Wilma the Weimaraner. Rebecca particularly enjoys working with clients who provide services to the community, and is stimulated by the challenge of creating effective visual communication for those with socially conscious missions.
Surviving SCAD lead Rebecca to a third passion, advocating and building awareness for the rare disease community and serendipitously partnering with the nonprofit Honeycomb Health, started by Elizabeth Apelles, Founder and CEO of The Greater Than One Group, a global healthcare marketing and communications agency, who has several friends and relatives afflicted with rare diseases and saw how difficult it was for them to manage and share their health information. Honeycomb Health (HH) unites patients, family members and health providers in rare disease management so that everyone affected by a rare disease could gain the power to securely store, manage, and share comprehensive information about their health. Honeycomb Health also offers free online store fronts to rare disease advocacy groups as a way to contribute to funding new research. https://honeycombhealth.store/
Elizabeth Izard Apelles is CEO of The Greater Than One Group (GTO). GTO is an independent healthcare marketing and communications agency. GTO’s digital-first, technology-enabled framework uniquely leverages the convergence of content, media and data to advance your healthcare marketing investment and build powerful healthcare brands.
Hillary Stires received her BS in behavioral neuroscience from Lehigh University and her PhD in endocrinology and animal biosciences from Rutgers University, and completed a postdoctoral fellowship in tumor biology at Georgetown University’s Lombardi Comprehensive Cancer Center. Her research focused on tumor development and drug resistance in breast cancer. During her postdoctoral fellowship, Hillary became passionate about improving cancer research through establishing relationships between cancer researchers and patient advocates. Hillary actively engages with the patient advocate and research communities through twitter and has talked about her work in bringing these groups together in podcasts, blog posts, and a TEDx.
After her postdoc, Hillary worked as a consultant at Avalere Health where she supported clients in regulatory strategy and navigating the FDA policy environment. Hillary is now a science policy analyst at Friends of Cancer Research, an advocacy think tank based in Washington DC. At Friends, Hillary supports the development and implementation of the organization’s research and policy agenda to drive collaboration that improves cancer research and patient outcomes. She also works with Teresa's Research Foundation to support opportunities that build relationships between research scientists and patient advocates.
Dr. Cooper’s bio is extensive, but can be summarized into 3 words: Mind… Body… Business The mind? He holds a PhD in Performance Psychology, was a national columnist for 20+ years, had his research published in peer reviewed journals internationally, written 5 books, and spoken professionally in all 50 states plus multiple times in Europe. The body? He earned a Masters degree from one of nation’s top physical therapy school, has completed 11 Ironmans (including 4 times at the World Championship in Hawaii) won the Race Across America and was recognized as “The World’s Fittest CEO” in 2016. Business? He is the CEO of US Corporate Wellness, co-founder of the Catalyst Coaching Institute, holds 2 US Patents, an MBA, and hosts a popular international health, wellness & performance podcast. However, he’ll be the first to clarify none of these hold a candle to being husband to Suzanna, his bride of 29 years and Dad to 3 incredible (adult) kids, Ashley, Danielle and Joshua and their two Australian Shepards Kona (14 yrs) and Sky (1 yr). The Coopers live (and play) in Fort Collins, Colorado.
• Website - https://www.catalystcoachinginstitute.com • The Coaching Channel - https://www.youtube.com/c/CoachingChannel • Twitter - @Catalyst2Thrive • Podcast is Health, Wellness & Performance Coaching Podcast (via any podcast app or outlet)
Chris spent approximately 25 years working for himself in the lady’s garment industry. During that time, he helped create a multi-million-pound business from scratch.
During 2007 Chris was diagnosed with incurable cancer. But has survived the extreme treatments and side effects, to become one of the most respected voices in the subject across the world.
His website, (www.chris-cancercommunity.com) has won numerous awards since it’s inception in 2012. It was voted UK Health Blog of the year and is consistently voted in the top 10. Winning awards in the US too.
In 2017 he co-founded an innovative charity called SimPal,(www.yoursimpal.com) Giving free phones and pre-paid sim cards to people affected by cancer poverty. To ensure they could stay in contact with their loved ones during such difficult times. The only organisation in the world doing this work.
Chris is a Fellow of the Royal Society of Arts Manufactures and Commerce. He has travelled extensively, giving keynote talks across the world. He is using his personal experiences to improve the lives of people affected by cancer. Particularly during the global pandemic.
A 2nd generation prostate cancer survivor and advocate on proactive prostate cancer health.
President and co-founder of the Prostate Cancer Awareness Alliance-DMV (PCAA-DMV) – a non-profit focused on helping men to – Get a GRIP on Prostate Cancer – through educational and informational interactive sessions highlighting prostate cancer treatment centers and cancer support services within the DMV. And through shared survivor stories. Co-author on family prostate cancer book – “Prostate Cancer – a Family Affair”
Career spans over three decades in information technology as a Cybersecurity Officer/Enterprise Solutions Architect.
Master martial arts instructor/practitioner for more than 49 years in seven styles. Currently teaching - Tang Soo Do, Tai Chi, and self-defense – Silver Spring, MD. Avid cyclist – averaging 50mi plus/week A father, son, and husband 5-year proactive prostate cancer survivor – April 19th – second birthday on life.
To find out more about PCAA-DMV and Derrick A. Butts – https://pcaadmv.org
Wenora Johnson is a 3x Cancer survivor, Research/Patient Advocate and Navy Veteran. Wenora began working closely with the organization Fight Colorectal Cancer (FightCRC) as a Research Advocate following her diagnosis of stage 3b colon cancer in 2011.
As a Lynch Syndrome patient, Wenora also advocates for genetic testing and awareness. She serves on various panels and review boards to provide extensive feedback on her role as a patient and research advocate with organizations such as CAP (College of American Pathologist); Clinical Trials Curator for Fight CRC; FORCE (Facing Our Risk of Cancer Empowered) Volunteer and Board Member; a Consumer Reviewer for the DoD Peer Reviewed Cancer Research Program; a PCORI (Patient-Centered Outcomes Research Institute) Ambassador and Clinical Trials Panel Member; CPAT Member for the National Coalition for Cancer Survivorship (NCCS); CMS TEP Panel Member to review Medicare/Medicaid guidelines; AACR Scientist~Survivor Program - presenting a poster on financial toxicities and disparities among minority patients and a National Quality Forum (NQF) Cancer Standing Committee Member. She has written patient advocate blogs and participated as a guest speaker/panelist. Wenora works in administration in the greater Chicagoland area and enjoys her motorcycle, reading and traveling with her family.
Claire Snyman is an author, blogger and advocate for patient and healthcare collaboration. She is passionate about inspiring people to put their health in their own hands as a result of her own lived experience as an individual with a brain tumour and other chronic health conditions. She has co-authored a scientific study between neurosurgeons and patients and has developed The “TEAM Approach” to help people become more health confident in their health and health care. Claire is a TEDx Speaker, a member of the Canadian Medical Association’s Patient Voice and is always looking for ways to increase communication and collaboration between patients, families and caregivers and the healthcare system to improve the patient experience.
Her books Two Steps Forward – Embracing life with a brain tumor and most recently published, How to Save your Life in a Complex Health Care System, can be purchased on Amazon.com.
Santi K.M. Bhagat, MD, MPH, is a mother of a young adult with a chronic medical condition, a physician, and the founder of a grassroots, voluntary charitable organization, Physician-Parent Caregivers (PPC). PPC’s health care and policy research and analysis uncovered a lack of systemic supports for young adults who grow up with childhood-onset health conditions. PPC seeks to advance policy change for young adults with chronic conditions in health care, education, work, society and government.
Dr. Bhagat works at the interface of health policy, medicine, disability and advocacy to identify strategies that will enable young adults with chronic conditions to live full lives. Through PPC, she leads a national multistakeholder group of policy experts, physicians, disability experts and advocates, parents and young adults in meetings, workgroups and community building. She has co-chaired national multi-stakeholder roundtables, introduced state legislation, authored policy briefs and medical articles and held charity events. Dr. Bhagat fosters partnerships with leading national organizations and connects with young adults and parents in the community.
PPC launched a young adult social movement Invisible Wave in 2020 to create a safe space for these young adults. In 2021, PPC’s Higher Education bill for students with chronic conditions passed in the Maryland General Assembly. PPC was featured in JAMA’s first piece on young adults with chronic conditions.
Dr. Bhagat promotes policies based on the patient-physician relationship and person/family-centered design. The heart of her work is centered on giving a face and voice to these young adults and their families.
Dr. Ronald Wyatt is Vice President and Patient Safety Officer with MCIC Vermont, a major medical malpractice company.
He was born in Selma Alabama and grew up in nearby Perry County (Heiberger) Alabama.
Prior to joining MCIC Vermont, Dr. Wyatt was formerly Chief Quality and Patient Safety Officer at Cook County Health in Chicago Illinois. He served as Chief of Patient Safety and Quality for the Hamad Medical Corporation, a fourteen-hospital system, in Doha Qatar.
Dr. Wyatt was the first Patient Safety Officer at the Joint Commission.
Dr. Wyatt is an internationally known patient safety and health equity subject matter expert. He has been recognized as a “Top 50” leading patient safety expert, by Becker’s, on three occasions.
He Co-chairs the Institute for Healthcare Improvement (IHI) Equity Advisory Group and is faculty for the IHI Pursuing Equity Initiative.
Dr. Wyatt is a member of the American College of Graduate Medical Education (ACGME) Clinical Learning Environment Review committee (CLER) as well as faculty on the ACGME Disparity Collaborative.
He also serves on several boards including the IHI Certified Professional in Patient Safety (CPPS), the Society to Prevent Diagnostic Error (SIDM) and the Consumers Advocating for Patient Safety (CAPS).
Dr. Wyatt is a credentialed course instructor in the School of Health Professions at the University of Alabama Birmingham. He is co-course director Keystone Program at the Northwestern University School of Medicine Master’s Degree in Patient Safety Chicago, Illinois.
Dr. Wyatt holds an honorary Doctor of Medical Sciences from the Morehouse School of Medicine and is a graduate of the University of Alabama Birmingham School of Medicine, was chief resident in Internal Medicine at St. Louis University School of Medicine, where he was the first Black American Chief resident in the history of the Saint Louis University System.
Dr. Wyatt is a board-certified Internist and practiced medicine for over twenty years, in St. Louis Missouri and Huntsville, Alabama. He earned the master’s (executive program) in health administration degree from the University of Alabama Birmingham School of Health Professions. He was a 2009-2010 Merck Fellow at IHI.
Dr. Veronique Mead was a family physician and assistant professor with an obstetrical practice before leaving medicine because she felt she was causing harm. Retraining as a somatic therapist provided insights through a comprehensive understanding of trauma. She has been aggregating the large bodies of evidence revealing how adversity influences health for two decades.
Anne H. Charity Hudley, PhD is Professor of Education and Linguistics at Stanford University. Her research and publications address the relationship between language variation and educational practices and policies. She has a particular emphasis on creating high-impact practices for underrepresented students in higher education. Charity Hudley is the co-author of three books: The Indispensable Guide to Undergraduate Research, We Do Language: English Language Variation in the Secondary English Classroom, and Understanding English Language Variation in U.S. Schools. Her fourth book, Talking College, will appear in the spring of 2022. She is a lung cancer patient researcher on the NIH and Moonshot Cancer fund sponsored clinical trial: Self-Management Survivorship Care in Stage I-III Non-small Cell Lung Cancer or Colorectal Cancer: https://clinicaltrials.gov/ct2/show/NCT04428905
Website: https://annecharityhudley.com/ LinkedIn: https://www.linkedin.com/in/annecharityhudley/ Twitter: https://twitter.com/ACharityHudley Instagram: https://www.instagram.com/acharityhudley/
Emma T. Charity is a senior at the Winsor School in Boston, MA, and will be a first-year undergraduate at Stanford University in the Fall. Emma is a Research Intern at Dana-Farber Cancer Institute as part of the Yes For Cure Program and a Founding Member of the Student Board for Equity and Inclusion at her high school. In the future, she hopes to use her undergraduate degree to propel her into a career in public health. LinkedIn: https://www.linkedin.com/in/emma-charity-1640641a3/ More information about Yes For Cure: https://www.dfhcc.harvard.edu/research/cancer-disparities/students/yes-for-cure/
Ann’s interest in Pediatric Oncology began when, at age 43 she was diagnosed with osteosarcoma, a primary bone cancer that affects kids aged 10-25, and was treated in the Pediatric Cancer Center at Memorial Sloan Kettering. Like most adults, she was unaware of how little funding pediatric cancers receive, how great the suffering is, and how too often the youngest patients lose limbs, organ function and their lives to cancer.
Ann began MIB Agents in 2012 when fellow osteo patient, Alyssa Divers, age 11 was sent home on Hospice. Ann rallied her friends to create an extraordinary NYC experience for Alyssa and her family in her last week of life.
Today, MIB Agents Makes It Better (MIB) for kids with osteosarcoma through:
● Research: Funding through OutSmarting Osteosarcoma Annual Grant voted on by OS families with our Scientific Advisory Team. ● Education: Sharing through OsteoBites weekly webinar and podcast and through our Annual Conference which brings together all constituents to listen to the top researchers and innovators in osteosarcoma and collaborate for better, the Testing and Research Directory where to go to inform research or a personal treatment plan, and through our Book, “Osteosarcoma: From Our Families to Yours”. ● Programs: Writer Agents, international letters of encouragement to kids in treatment, Gamer Agents OS survivors game with those in treatment, Prayer Agents international prayer network for urgent and ongoing prayer requests, End Of Life Missions for OsteoWarriors who have no curative treatment options, Healing Hearts Bereaved Parents Program a 6-week grief course for osteosarcoma parents, Junior Board AYA affected by OS contribute greatly to MIB Agents direction and programs, and Ambassador Agents who survivors of OS and are trained to be Certified Peer Visitors to those in treatment or newly diagnosed. Our wholehearted belief is in advocacy with and for the entire disease community - researchers, clinicians, patients and their families. Understanding that all constituents working toward the common goal of “better” is the best and most expedient way toward improving outcomes.
Katherine Leon is co-founder and Board Chair of SCAD Alliance, a nonprofit dedicated to research of spontaneous coronary artery dissection (SCAD), a non-atherosclerotic cause of heart attack and sudden cardiac arrest. In 2003, Katherine survived a 90% blockage of her left main artery caused by SCAD, which required emergency double bypass surgery. Finding no clinical studies of SCAD had been conducted, she pursued this goal by finding other SCAD patients online and compiling anecdotal data. She collaborated with Mayo Clinic in 2010 to facilitate a virtual registry of SCAD patients worldwide. In 2013, Katherine co-founded SCAD Alliance, a 501c3. In addition to patient support and advocacy, SCAD Alliance sponsors the independent, multi-center iSCAD Registry. In its first two years, iSCAD Registry launched 17 sites across the U.S., with four in progress, and enrolled 644 patients. Katherine earned a Bachelor of Arts at the University of Virginia and a Master of Science at Northwestern University.
Timothy McMahan King is the author of Addiction Nation: What the Opioid Crisis Reveals About Us. After a near-fatal illness led to his doctor's prescribing him opioids for the pain, King ended up where millions of others have: addicted. But his story didn't end in tragedy like so many others. He had a doctor who understood the nature of addiction and a healthy support system that allowed him to step down off of opioids over time and learn to manage his pain without them. His was not a story of dramatic recovery or super-human willpower but a demonstration of the importance of empathy, care, and evidence-based support from others.
King didn't tell his story for years. But, when he saw the death toll from overdoses rise, he decided to speak out. In his writing, he explores all the many factors that can contribute to addiction and support others in their road to recovery and living a healthy and full life. He asks moral, ethical, and political questions about what rising rates of addiction and overdose deaths say about our world today.
You can find Tim on Facebook, visit his website or listen to one of his talks. He also recently released an audio version of his book edited by the very same editor of this podcast- Stan Vdovikski.
He is also a board member for the Center of Addiction and Faith and hosts a monthly webinar covering a variety of addiction-related topics for faith communities.
Tina Aswani Omprakash is a Crohn’s patient and award-winning patient expert and health advocate based out of New York City. She has had Crohn’s Disease for 15 years and has had numerous surgeries. Tina maintains a blog and advocacy platform called Own Your Crohn’s (http://ownyourcrohns.com) and recently co-founded IBDesis, a community for South Asians living with inflammatory bowel disease (IBD). Her overarching aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help diverse groups of patients own their ailments to live fuller, happier lives.
Via her writing, lobbying, social media advocacy and speaking engagements, she spearheads public health causes, including those proposing research for and creating awareness for IBD, life-saving ostomy surgery, gastroparesis, fistulizing disease and initiatives supporting health equity for women and racial, ethnic & sexual minorities.
Tina is pursuing her Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Additionally, she does freelance work for non-profits as well as ostomy manufacturers, in addition to pharmaceutical and digital health companies to help them recognize disparities and unmet needs in minority health populations.
The Crohn’s & Colitis Foundation recognized Tina in 2021 for her phenomenal leadership and powerful impact on the IBD community with the Above & Beyond Volunteer Award. Tina’s blog was also recognized as a 2020 Best Blog by Healthline and she was awarded the 2019 Healio Gastroenterology Disruptive Innovator Award by the American College of Gastroenterology for moving the needle on GI care for patients.
Chris Bright is an international Futsal player who’s represented Wales on multiple occasions across Europe and a patient advocate for those with type 1 diabetes after living with the condition since 1999. Chris now focuses on empowering people with Diabetes through the tool of Football (Soccer). He pushes for greater educational support for people with the condition whilst also trying to create opportunities for those with the condition to mix and learn from each other through participation within the sport.
Chris project manages and coaches the UK’s first all type 1 diabetes Futsal squad to play in the European Futsal Championship for people with Diabetes (DiaEuro) as part of his work as the founder of The Diabetes Football Community (TDFC) . The community is an award winning peer support project that’s been featured in national campaigns in the UK to raise awareness of type 1 diabetes. TDFC aims to bring people together who are passionate about football who live with diabetes to receive education, inspiration and lived experience advice. The organisation is now a leading peer support community in sport for people with Diabetes from across the world.
As a result of the growth of the project Chris went back to university in 2017 to study about the social and cultural reasons behind its expansion through his master’s degree in research and is passionate about tackling the stigma associated to diabetes through the impact of peer support. Alongside his degree Chris has also been coaching people on the type 2 diabetes prevention programme on behalf of the National Health Service (NHS) in the UK.
Links:
My social media is @chrisbrighty1 on Instagram and Twitter
The Diabetes Football Community: www.thediabetesfootballcommunity.com
The Diabetes Dugout podcast: https://thediabetesfootballcommunity.com/the-diabetes-dugout-podcast/
Chris Bright’s Story of reaching the Wales International Futsal squad: https://www.youtube.com/watch?v=pl_jTCGZb2c&t=1s
Chris’ Story as part of the national TV campaign “We Are Undefeatable” in the UK: https://www.youtube.com/watch?v=19T9M5944E4
Dr. Danny Sands is passionate about healthcare transformation. A practicing physician with training and experience in clinical informatics, Dr. Sands has worked in a variety of capacities in the healthcare IT industry for over 25 years. He spent almost 14 years doing clinical informatics at Beth Israel Deaconess Medical Center, where he developed and implemented innovative systems to improve clinical care delivery and patient engagement, including clinical decision support systems, an EHR, and one of the nation’s first patient portals. This was followed by leadership positions including Cisco, Zix Corporation, and others.
Dr. Sands is the recipient of numerous healthcare honors, including recognition in 2009 by HealthLeaders Magazine as one of “20 People Who Make Healthcare Better.” He is the co-author, with e-Patient Dave deBronkart, of Let Patients Help.
Dr. Sands has earned degrees from Brown University, Ohio State University, Harvard School of Public Health, and trained at Boston City Hospital and Boston’s Beth Israel Hospital. Dr. Sands holds an academic appointment at Harvard Medical School and maintains a primary care practice at Beth Israel Deaconess Medical Center in which he makes extensive use of health IT—much of which he helped to introduce. In addition to practicing, Dr. Sands works with a number of innovative companies and is a co-founder and the chief advocacy officer of the Society for Participatory Medicine. He is a popular speaker and consultant, blogs at DrDannySands.com and tweets as @DrDannySands.
Dave Bjork is a patient advocate and research evangelist with more than 20 years of progressive experience in nonprofit advocacy, community-building and fundraising leadership roles. He is currently a consultant on the Patient Driven Design team at Medidata Solutions advising on bringing the patient voice to the clinical trial experience. Dave is also host of the Research Evangelist podcast and blog where he interviews people in life sciences that are doing brilliant work in cancer research. Previously Dave served 4 years as Director of Development and Community Relations at FRAXA Research Foundation where he was responsible for building relationships between the Fragile X community and biopharma companies to help advance treatment development in Fragile X syndrome. Before FRAXA Dave spent 4 years as Vice President of Development for National Foundation for Cancer Research where he was responsible for all fundraising and advocacy efforts.
A lung cancer survivor, Bjork has made it his life mission to connect patients, biopharma companies, academic institutions and other key influencers to forge strong partnerships to focus on research. He also advocates for and builds bridges between patient groups and the biopharma industry. Bjork earned a BS in Economics and Finance from the Wharton School at the University of Pennsylvania.
Pamela Katz Ressler, RN, MS, HNB-BC is the founder of Stress Resources and an Adjunct Clinical Assistant Professor of Public Health and Community Medicine at Tufts University School of Medicine in Boston, MA. She has served as the only nurse on the Executive Board for Medicine X at Stanford University and as a member of the Consumer Health Council of the Massachusetts Health Quality Partners.
Ms. Ressler’s work focuses on resilience and communicating the experience of chronic pain and illness through mindfulness based interventions, peer to peer healthcare, and narrative practices. Her research is grounded in the science and the art of wellness and human connection and she has been Her work has earned her the distinction as a thought leader in the field and was selected to co-design The Narrative Playbook: The Strategic Use of Story to Improve Care, Healing and Health (2015). In 2020, Ms. Ressler launched the podcast Raising Resilience which she hosts and produces.
Ressler sits on the Board of Directors of ChildKind International, an organization dedicated to improving the quality of pediatric pain care around the world, and was honored to be selected as a 2019-2020 Mayday Pain and Society Fellow. She is a member of the International Association of the Study of Pain (IASP) and serves on the IASP’s Global Alliance of Pain Patient Advocates (GAPPA). Her consulting work with businesses, schools, and healthcare organizations is ongoing and expanding as leaders seek strategies of sustainable resilience in our fast paced society.
Kimberly Warner is a film director and producer based in Portland, Oregon. After receiving her degree in Pre-Med and Biology at Colorado College and pursuing her Masters degree at National University of Naturopathic Medicine, Kimberly abruptly changed paths and has never looked back. Her work, still founded in a passion for the psychological and social patterns that influence healing, has traded herbs for a camera, prescriptions for storytelling.
Kimberly has written, shot, directed and edited narrative films, webisodes and corporate and non-profit brand videos. She’s written and directed two of her own narrative short films and both have screened at film festivals globally and garnered numerous awards.
In 2015, Kimberly developed Mal de Débarquement Syndrome, an incurable neurological disorder that manifests as a feeling of constant rocking, bobbing or swaying. As months turned to years, her sense of self dissipated as her relationship to her body, her career and her community faded. At forty years young, she watched the rest of the world continue on while she was stuck trying to figure out how to put her pants back on.
After years of isolation and desperately chasing a fix, Kimberly realized the chase was making her more sick. So she decided to learn how to say “yes” - yes to the messy, uncomfortable, painful journey of being alive and how to incorporate it into a bigger, fuller definition of herself. She founded Unfixed Media Productions in 2019 as way to find others who are doing the same, have honest conversations and demonstrate that our wounds and weaknesses are our strengths, they complete us and they equip us to help others.
These inevitable peaks and valleys of living with an incurable, chronic condition are part of an expanding Unfixed portfolio that currently includes a docu-series, podcast, round-table webcast and feature documentary film all in production.
Unfixed Media Productions has led to Kimberly’s larger advocacy role within the chronic illness community where, alongside directing and producing media, she writes and speaks about her own patient experiences and how healing can exist even when our bodies can’t be cured. She is the 2020 recipient of the Invisible Disabilities Association’s Media Impact Award.
When Kimberly isn’t nurturing and developing the many facets of Unfixed, she works a small, sustainable homestead with her husband in rural Oregon.
Links website: www.unfixedmedia.com Youtube: https://www.youtube.com/UnfixedCommunity Podcast: https://unfixedmedia.com/podcast Instagram: https://www.instagram.com/unfixed_film/ Twitter: https://twitter.com/unfixed_film Press: https://unfixedmedia.com/press-1 Personal website: www.kimberlywarner.com
Esther (Soo Hyun) Kim, MD, MPH immigrated to the United States with her family from Seoul, South Korea, at the tender age of 5 years. She grew up in St. Louis, Missouri, and attended Duke University for her undergraduate studies. She went on to receive her medical degree from Duke University Medical Center and her Master of Public Health degree at the University of North Carolina Chapel Hill. She completed her internal medicine training at Johns Hopkins Hospital in Baltimore, Maryland, and completed her cardiology and vascular medicine fellowships at the Cleveland Clinic in Cleveland, Ohio. She was a staff member in the Department of Cardiovascular Medicine at the Cleveland Clinic for eight years prior to joining the faculty at Vanderbilt University Medical Center as an Associate Professor of Medicine in the Division of Cardiovascular Medicine, where she is the Director of the Arteriopathy Clinic and the Medical Director of the Vascular Laboratory. She has a special interest in the care of patients with uncommon arterial disorders, namely spontaneous coronary artery dissection and fibromuscular dysplasia. She is the Chair of the Scientific Advisory Board of SCAD Alliance, a non-profit patient organization for patients with SCAD, and the national PI of the iSCAD Registry, the largest multicenter SCAD registry in the United States. She serves on the board of the Society for Vascular Medicine, the Vascular Testing division of the Intersocietal Accreditation Commission, and is the next Vice Chair of the Peripheral Vascular Disease Council for the American Heart Association. She considers herself mid-career with several exciting clinical and research initiatives underway, and she daily thanks the Lord above that she is able to live out her lifelong dream of serving others. She is a wife, mother, and physician (in that order) and strives to be a perpetual learner. When she started medical school, her mother gifted her a blanket with the words “faith,” “hope,” and “humble” embroidered on it. At the time, she wondered where the word “love” was, but she now realizes that she has been gifted a fairytale life full of love, and the reminder to be “humble” was her mother’s prophetic word of wisdom. The complexities of medicine and her patients keep her humble, and for that, she is grateful. https://www.youtube.com/watch?v=vIGPRTrogjo https://medicine.vumc.org/person/soo-hyun-esther-kim-md-mph-rpvi https://scadalliance.org/board-list/advisory-board/ https://www.vanderbilthealth.com/program/spontaneous-coronary-artery-disease-scad https://www.youtube.com/watch?v=5rMKWxbbe_s https://www.youtube.com/watch?v=3V9qH1HRDg8 https://www.facebook.com/VanderbiltHealth/posts/friday-introduction-hi-im-dr-esther-kim-a-cardiologist-and-vascular-medicine-spe/10157109298805859/ https://www.fmdsa.org/research_network/fmd_registry https://www.nejm.org/doi/pdf/10.1056/NEJMra2001524
Luke Escombe is an award-winning singer-songwriter, musician, and comedian who has turned his 25 years of living with chronic illness into inspiration for his art.
Growing up in London, with a Rock and Roll Dad who worked in the music business, Luke’s dreams of rock stardom suffered a serious blow at the age of 14 when he was diagnosed with Crohn’s Disease. After spending long stretches of his 20’s either housebound or heavily medicated, Luke finally launched his first album as a singer-songwriter at the age of 30, only to end up in hospital again a few months later, requiring blood transfusions to live through the night. His life since that time has been a remarkable transformation, driven by a change in values and a fundamental resetting of his relationship with himself, his creativity, and his art.
Luke’s breakthrough as a writer/performer came in 2011 with his one-man show “Chronic”, which combined multiple music styles with candid stand-up comedy about his many hospital stays. It was Luke’s ticket to festivals all over Australia, and the start of his unexpected journey into health advocacy.
The follow-up to “Chronic” was a kids band called “The Vegetable Plot”, which played its first show at the 2014 Sydney Fringe. After years of speaking about illness, The Vegetable Plot was Luke's way of making a fresh start: writing songs and playing music for kids, families, and foodies with an emphasis on having fun and being healthy. The Vegetable Plot won the award for Best Kid’s show at the Fringe and has since played at major events all over Australia, including The National Folk Festival, Woodford, Sydney Festival and Splendour in the Grass. The band signed a deal with ABC Kids in 2019 and received an ARIA nomination in 2020 for their most recent album, Season Two.
Luke is an ambassador for Crohn's and Colitis Australia and The Gut Foundation, a member of the NSW Arts Advisory Panel and a teaching artist with the Sydney Opera House's Creative Leadership in Learning Program. He has spoken three times at Parliament House in Canberra, as well as at the New Zealand National Museum in Wellington, the National Medicines Symposium, the Patient Experience Symposium, and at conferences, workshops, support groups, award ceremonies and training seminars across the country.
2017 saw him crossing the Pacific for the first time, telling his story at events in Chicago and Miami for Johnson & Johnson. His work was recognised at the end of the year by WEGO Health, who named him as the winner of their “Hilarious Patient Leader” award. Since then, Luke has received standing ovations on four continents for his unique mix of storytelling, music, humour and insight into the patient experience. In 2019 he collaborated with Crohn’s and Colitis Australia to launch the podcast series The Bottom End, and followed that up at the end of 2020 with a new podcast - “Chronic” - made in collaboration with the US-based Gali Health app.
Luke was once described by John Shand in the Sydney Morning Herald as a “rock-soul singer, raconteur, blistering blues guitarist, comedian and songwriter...and very good at them all”, and is most often described by himself as the Mick Jagger of inflammatory bowel disease. He is also the ever-so-exceedingly humble owner of "Sydney's sexiest man voice", a title he scooped in a phone poll on a popular radio station.
Luke lives on Sydney’s northern beaches with his wife and son.
LINKS
Watch Luke’s “Master Key” comedy-music video about living with IBD: https://www.youtube.com/watch?v=sDBjI_Rqqm4
Luke’s website: https://www.lukeescombe.com/
The Vegetable Plot website: https://www.thevegetableplot.com.au/
Luke’s “Chronic” Podcast: https://soundcloud.com/luke-escombe/sets/chronic-podcast
Craig Lipset is the founder of Clinical Innovation Partners, providing advisory and board leadership with pharma, tech and venture capital to bring vision and driving action at the intersection of research, digital solutions, and patient engagement. He is co-chair for the Decentralized Trials & Research Alliance, serves on the Board of Directors for the Foundation for Sarcoidosis Research and the MedStar Health Research Institute, as well as on the Editorial Board for Therapeutic Innovation & Regulatory Science. Craig is Adjunct Assistant Professor in Health Informatics at Rutgers University, and Adjunct Instructor in the Center for Health + Technology at University of Rochester.
Craig was the Head of Clinical Innovation and Venture Partner at Pfizer, on the founding Operations Committee for TransCelerate Biopharma, and on the founding management teams for two successful startup ventures.
Craig has been listed among the PharmaVOICE most inspiring people in the life sciences (Red Jacket hall-of-fame), Pharmaceutical Executive’s Emerging Leaders, CenterWatch Top 20 Innovators in Clinical Trials, and the AlleyWatch Who's Who in eHealth.
Rod was diagnosed with Stage IIIB IBC and treated with FEC x 3, Taxol x 3, a mastectomy and axillary clearance, with 2/23 nodes positive, and had 33 doses of radiation. He has been on tamoxifen for six years. Rod soon realised that he needed to get up to speed on treatments to ensure that the was receiving best-practice protocols.
Two years later, he was diagnosed with prostate cancer and had a prostatectomy. Currently he's NED for both cancers.
Rod tries to engage effectively on social media He is a regular poster on Twitter @malefitness and contributes to various closed breast and prostate cancer Facebook pages. He also writes articles and creates videos. The articles can be found HERE and on the Media page of his website, MaleBC.org, which includes links to the latest research, and to a Manifesto which is aimed at securing some basic equivalence for men diagnosed with and treated for this disease. He's also the survivor story editor for the Male Breast Cancer Coalition.
As well as speaking about male breast cancer at local functions, he volunteers as a telephone counsellor. Rod regularly appears in a variety of media, educating and informing the public about breast cancer as a genderless disease.
At 50 years old James Gagli committed to medical training. In this podcast he explores the reasons for starting on the most demanding course of education in the hope of serving as a doctor in years to come.
Bárbara Segarra-Vázquez, D.H.Sc., has been a faculty member at the University of Puerto Rico for more than 30 years, is the Dean of the School of Health Professions, and the Principal Investigators of a R25 training program for young investigators funded by NIMHD. Dr. Segarra-Vázquez is a two time breast cancer survivor and became an advocate after her first diagnosis. She became a volunteer for Komen Puerto Rico and was Board President for four years. Under her leadership the PR Affiliate received the Komen Promise Award. She has also traveled to Komen Global Initiative to meet with different groups that provided services to breast cancer patients and participated in a public activity of breast. Dr. Segarra-Vazquez is very active as a research advocate and one of her main focus is to increase diversity in clinical trials. She has served several times as a consumer reviewer for the Breast Cancer Research Program of the DoD. She is the Vice-Chair of the Susan G. Komen Advocates in Science Steering Committee, and is a member of SWOG Cancer Network Patient Advocates Committee and the Cancer Care Delivery Committee. She was a member of the Puerto Rico Cancer Control Coalition for ten years. She is the co-founder and co-investigator of HIDEAS (Hispanics Increasing Diversity to Enhance Advocacy in Science).
David Fajgenbaum, MD, MBA, MSc, FCPP, is an Assistant Professor of Medicine in Translational Medicine & Human Genetics at the University of Pennsylvania, Director of the Penn Center for Cytokine Storm Treatment & Laboratory (CSTL), Executive Director of the Castleman Disease Collaborative Network (CDCN), and Associate Director, Patient Impact for the Penn Orphan Disease Center.
David Fajgenbaum is a groundbreaking physician-scientist, disease hunter, speaker, and bestselling author of the acclaimed memoir, Chasing My Cure: A Doctor's Race to Turn Hope Into Action. He went from being a beast-like college Quarterback to receiving his last rites while in medical school and nearly dying four more times battling Castleman disease. To try to save his own life, David spearheaded an innovative approach to research through the Castleman Disease Collaborative Network (CDCN) and discovered a treatment that is saving his life and others. Now, he is spreading this approach to other diseases such as COVID19.
One of the youngest individuals ever appointed to the faculty at Penn Medicine and the top 1 percent youngest grant awardees of a leading NIH grant (R01), David Fajgenbaum has been recognized on the Forbes 30 Under 30 list, as a top healthcare leader by Becker's Hospital Review, the Global Genes RARE Champion of Hope: Science awardee, and one of three recipients--including Vice President Joe Biden--of a 2016 Atlas Award from the World Affairs Council of Philadelphia. He has published scientific papers in high-impact journals such as Blood, Lancet Hematology, and the Journal of Clinical Investigation, including a paper selected as one of the top innovations in science and medicine by STAT News in 2020. Before co-founding the CDCN, David co-founded and led the Actively Moving Forward Support Network, a non-profit organization dedicated to supporting grieving college students. David Fajgenbaum has been profiled in a cover story by The New York Times as well as by Good Morning America, CNN, and the Today Show, among others.
David earned a BS from Georgetown University magna cum laude with honors and distinction, MSc from the University of Ox-ford, MD from the University of Pennsylvania Medical School, and MBA from The Wharton School.
Christophe Jauquet is an international keynote speaker and author of the book “Healthusiasm”. As a health marketing expert, he inspires consumer businesses and healthcare organisations around the world. With his experience at the intersection of health, marketing and technology, Christophe guides companies and brands in creating business strategies to remain relevant in this Healthusiasm World.
Geri is a patient, family caregiver, and clinician advocate. She works to improve care communication through asynchronous technology, health literacy, and co-design. She currently works with Docola - a social good organization that's created a free care communication platform to help hospitals, clinics and care providers find and e-prescribe education and resources to patients and care partners. She’s building a patient education content clearinghouse. Contact her if you’d like to contribute resources to this community platform.
She also co-founded the Difference Collaborative and the Difference Collaborative Alliance to help employers ensure working family caregivers can maintain their health, employment, wellbeing, and sanity — and to create a culture of care tol improve the future of work for everyone. They're currently partnering with researchers at the Johns Hopkins and Purdue schools of nursing to understand how organizations can support nurses who are also family caregivers. Nurse managers, nurse leaders and healthcare org HR directors can participate in the study here.
Se writes a column on health communication and patient engagement on Healthcare IT Today.
She’s also active in the Patient Experience Policy Forum, Patient Advocates Transforming Healthcare, and is a lifetime member of the Society for Participatory Medicine.
Connect with her on LinkedIn: https://www.linkedin.com/in/geribaumblatt/ Follow her on Twitter at: @GeriLynn @DiffCollab @docolainc
Daniel G Garza has been an HIV/AIDS Patient Leader, Advocate, and Educator since 2001 starting in The Rio Grande area of Texas, Houston, and now in Southern California.With a foundation based on teaching prevention to high schools, colleges, and universities. A member of the Board of Directors for Radiant Health Centers and Chair of the Client Advisory Committee. A member of Positively Fearless campaign, Ambassador for Global Healthy Living Foundation, Rainbow Soul Circle, LyfeBulb, and Wisdo, On social media, you can follow him on his Put It Together Conversation Podcast, HIV Positive Life on Facebook, Twitter, YouTube, and Instagram. He is the winner of the Hero of Hope Award for Patient Advocacy from iPain International Foundation. His company Lilmesican Productions, a Social Enterprise, is producing shows that maximize the benefits to the community. Links: Radiant Health Centers https://www.radianthealthcenters.org/ Positively Fearless https://www.positivelyfearless.com/ Put It Together Conversations Podcast on YouTube https://www.youtube.com/playlist?list=PLlh31gond1YDvCjld52l_46Ko7-Fw6tdS HIV Positive Life on Facebook https://www.facebook.com/HIVPositiveLife Lilmesican Productions https://lilmesican.wixsite.com/lilmesicanprod
Amit Goyal is a cardiology fellow at the Cleveland Clinic. He is co-founder and host of the CardioNerds Podcast and co-host of the Talking Tall Rounds Podcast. He completed his medical school at the University of California, San Diego and went on to enjoy residency training in the Osler Program at Johns Hopkins Hospital, where he served as the Assistant Chief of Service of the Barker Firm. As ACS he founded Osler Grand Rounds, an interactive mystery case discussion, and helped establish a novel morning report structure integrating bedside skills education. He is looking forward to a career in interventional cardiology and medical education. Outside of work, he is all about his four children: toddler son Dhruv, twin boys Aarav & Atharv, and his baby the CardioNerds platform. Links : • www.cardionerds.com • https://twitter.com/AmitGoyalMD
Grace B. Charrier is a debut Author, Speaker, Host and Content Creator of Cancer Convos with Grace B. She is also a proud survivor and thriver of Stage 3 Breast Cancer (DCIS).
After completing her treatment in 2017, she felt a strong calling to amplify her voice and reach out to and support cancer patients, survivors, and their families by inviting healthcare professionals to share their valid insights about cancer. This she achieved by establishing a thriving and engaging community via her YouTube channel and Facebook page, also called Cancer Convos with Grace B.
Grace Charrier has her hands full as she has caught the attention of many organizations and is serving in several capacities namely:
• American Cancer Society Cancer Action Network: Legislative Ambassador • Fight Cancer Global: Global Leadership Panel Member • WEGO Health: Patient Leader • Imerman Angels: Mentor Angel • Advocates for Collaborative Education: Member and Patient Advocate
Denise McCuaig is a Métis elder residing in British Columbia, Canada. She is the past Director, Aboriginal Health for the Interior Health Authority. Over the past two years she has been supporting the Canadian Foundation for Healthcare Improvement as an Indigenous Coach and Mentor. Denise is a board member of the Mood Disorder Society of Canada, First People’s Wellness Circle and Lii Michif Otipemisiwak Child and Family Services Society. She has four adult children and seven grandchildren; her personal motivation for advocating for health system change.
Don Dizon, MD, FACP, is Professor of Medicine at Brown University and a medical oncologist with research interestes in novel therapies of breast and pelvic cancers (e.g. ovarian, uterine, cervical cancers), survivorship particularly as it pertains to sexual health for men and women with cancer, and social media. He is the Director of the Breast and Pelvic Malignancies Program at Lifespan Cancer Institute and Director of Medical Oncology at Rhode Island Hospital. Additionally, he is the Chair of Digital Engagement for SWOG Oncology Research Network. Co-Chief Medical Officer at the Global Cancer Institute, and serves on the Board of The Hope Foundation and Young Survival Coalition. He is a prolific author and writes columns for multiple sites, including the professional journal, The Oncologist, ASCO’s networking site, Connection, and for Medscape. Dr. Dizon is on social media on Twitter, Facebook, Instagram, and TikTok as @drdonsdizon.
Soojin (or “Soo”) is a board certified geriatric pharmacist in Illinois and Wisconsin. She is also a certified professional in patient safety and certified professional in healthcare quality, evidently very passionate about patient safety and quality improvement. After losing her dad to many gaps in healthcare as a minority caregiver, possibly from medication adverse events, she changed her career from a wedding videographer to a pharmacist.
She specializes in medication therapy management and believes empathy in healthcare can make healing possible in any relationship of healthcare. She has experiences in both inpatient and outpatient pharmacies and has worked as a population health pharmacist that manages complex medication regimens and also helps with social determinants of healthcare. She is also an ambassador for Patient Safety Movement Foundation, a nonprofit organization dedicated to patient safety worldwide, where she passionately speaks up about patient safety, patient rights, minority health, and patient advocacy for voiceless patients. She speaks English and Korean and is eager to help patients!
Dr. BJ Miller is a longtime hospice and palliative medicine physician and educator. He currently sees patients and families via telehealth through Mettle Health, a company he co-founded with the aim to provide personalized, holistic consultations for any patient or caregiver who needs help navigating the practical, emotional and existential issues that come with serious illness and disability.
BJ’s been on faculty at his alma mater, UCSF, since 2007 and has worked in all settings of care: hospital, clinic, residential facility, and home. Led by his own experiences as a patient, BJ advocates for the roles of our senses, community and presence in designing a better ending. His interests are in working across disciplines to affect broad-based culture change, cultivating a civic model for aging and dying and furthering the message that suffering, illness, and dying are fundamental and intrinsic aspects of life. His career has been dedicated to moving healthcare towards a human centered approach, on a policy as well as a personal level.
BJ has given over 100 talks nationally, and internationally, on the topics of death, dying, palliative care and the intersection of healthcare with design. His 2015 TED Talk: “Not Whether But How” (aka “What Matters Most at the End of Life”), has been viewed over 11 million times and his work has also been the subject of multiple interviews and podcasts, including Oprah Winfrey, PBS, The New York Times, The California Sunday Magazine, GOOP, Krista Tippett, Tim Ferriss and the TED Radio Hour. His book, A Beginner’s Guide to the End, was co-authored with Shoshana Berger and published in 2019.
James Mold is a revered family physician, geriatrician, researcher, and leader who has helped to reshape our thinking about health and health care. Throughout his career, Mold has contributed to undergraduate and graduate medical education. He has inspired many young family physicians to get involved in research while continuing to provide outstanding care to patients. In 2014, the year he retired, the OUHSC established the James W. Mold Oklahoma Primary Healthcare Improvement Cooperative within its Center for Clinical and Translational Research, and he was named Family Physician of the Year by his clinician peers.
Dr. Ahmed is a Lecturer in Digital Business with a specialism in social media research in the Department of Marketing, Operations and Systems at Newcastle University. He completed his PhD at the University of Sheffield and his thesis examined the role of social media during infectious disease outbreaks. More recently, he has been working on examining social media data related to the COVID-19 Pandemic and specifically the spread of conspiracy theories on platforms such as Twitter. He is a regular contributor to the London School of Economics and Political Sciences Impact Blog and has been writing on tools and methods to extract data from social media platforms. The below are the two papers: COVID-19 and the 5G Conspiracy Theory: Social Network Analysis of Twitter Data (https://www.jmir.org/2020/5/e19458/) COVID-19 and the “Film Your Hospital” Conspiracy Theory: Social Network Analysis of Twitter Data (https://www.jmir.org/2020/10/e22374)
Dr. Tetteh is a Thoracic Surgeon and dedicated Physician Executive. Tetteh serves as the Mission Chief of Warfighter Health for the United States Department of Defense and leads a Specialized Thoracic Adapted Recovery (STAR) Team to expand heart and lung transplantation and save lives. A servant leader and humanitarian, Dr. Tetteh solves problems creatively with global perspective in administration, public policy, and entrepreneurship.
Rab Razzak, is clinical director of palliative care at an academic institution in Cleveland, Ohio, USA. After obtaining his medical degree from Bangladesh Medical College, he completed his internal medicine residency at Mount Sinai School of Medicine Program at St. Joseph's Regional Medical Center in Paterson, New Jersey. He worked as a hospitalist in the early years of his practice and then transitioned to a palliative medicine physician and worked at Cedars-Sinai Medical Center and Johns Hopkins Hospital prior to his arrival in Cleveland. His research and clinical interests include development of palliative care delivery systems, palliative medicine education, self-care, mentorship, and novel therapies for symptom management for palliative care patients. He is an avid volleyball player, healthcare organizer/advocate and amateur comedian, when not a father and husband. Follow him on social media: *Twitter (that's my go to!) : @rabrazzak IG: rabrazzak ; powersockdoc LinkedIn: https://www.linkedin.com/in/rab-razzak-0b33a16/ example of organizing: https://twitter.com/rabrazzak/status/1311111832866877440 (video of our pre-debate rally in front of the Cleveland Clinic in Cleveland, Ohio Rab helping with meditation at Hopkins: https://www.youtube.com/watch?v=f4Ijh5ruNAU Rab in a couple fun podcasts: https://www.cardionerds.com/37-palliative-care-in-heart-failure-with-dr-rab-razzak/ https://thepatientpodcast.libsyn.com/website/001-palliative-care-with-dr-rab-razzak
'm a primary care internist in full time outpatient practice. I'm a Clinical Assistant Professor at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, and participate in the Initial Clinical Experience Program mentoring first and second year medical students. I'm particularly interested in medical humanities, and narrative medicine. I've published several essays about the experience of caring for patients across the continuum of practice. My wife and I met in medical school; we have three wonderful children who show us what's important in life.
I can be followed on Twitter at: @EricLast3
Yoko K. Sen is an ambient electronic musician and the founder of Sen Sound, with a vision to transform the sound environment in hospitals. As a classically trained musician, sensitive to sound, she was disturbed by noise she had experienced in hospitals as a patient. Since then, she has embarked on a mission to humanize hospital experience by improving its sound. Yoko is a former citizen artist fellow at Kennedy Center, a former artist-in-residence at Johns Hopkins Sibley Innovation Hub and Stanford Medicine X, and KP Innovation at Kaiser Permanente. Sen Sound has helped medical device companies such as Medtronic and Johnson & Johnson to reimagine the sound experience design, and presented the importance of sound and clinician wellbeing at Northwell Health, Vanderbilt University Medical Center, and Lurie Children’s Hospital of Chicago. Yoko has presented nationally and internationally, including TEDMED (2018) and Aspen Ideas Festival: Health (2019), and her work has been featured in New York Times, BBC, and STAT. Sen Sound’s initiative, “My Last Sound,” was selected as a Top Idea by Open IDEO’s End of Life challenge, involving hundreds of people from around the world sharing the last sound they wish to hear.
Born and raised in Japan, Yoko was classically trained in piano from age three. Yoko had produced the album, “012906,” which was nominated for “Best Album in Electronica” by the 6th Independent Awards. She then produced the album “Heaven’s Library,” for which she received the Washington Music Association Awards for “Best Electronica Artist.” As a self-proclaimed “sound alchemist,” Yoko aspires to create music, which is, to quote Beethoven, “the mediator between the spiritual and sensual life.”
Photo credit: Standford Medicine X.
Passion, motivation and personal experience of living with metastatic breast cancer for the past 8 years, drives Lesley’s desire to partner with communities, researchers and organizations, in aiding the funding of research for a cure, bringing awareness to this overlooked stage of breast cancer and support to those who live daily with Metastatic Breast Cancer. She has been actively involved in metastatic breast cancer advocacy since 2015, training with the inaugural Hear My Voice Volunteer class presented by Living Beyond Breast Cancer. She was invited back as a mentor in 2018 for new advocates and was awarded the Living Beyond Breast Cancer Leadership Volunteer Award in the Fall of the same year. She is the Co-Founder of the Annual Make Good Moves, Climb for a Cure (www.climbforacure.net) that is held annually in Southern California, and Southern Oregon which funds research for a cure. She enjoys working with researchers and other stakeholders in the metastatic breast cancer field. She is a member of the Metastatic Breast Cancer Alliance, and is asked to speak on her experiences of living with metastatic disease in various capacities. She has always been an advocate, having previously run her own non profit, Dandelion Wishes, Inc, prior to her de novo metastatic diagnosis in 2012, she brought therapeutic art to the marginalized, international and incarcerated communities. She has transferred that advocacy to her personal life experience with cancer , and desires to extend her advocacy roles to include the underserved and rural communities. She is currently working on a new design, entitled Project Life, A Metastatic Breast Cancer Survivorship Initiative which will address the discontinuity in survivorship programming that leaves out the metastatic patient.
Michael W. Rabow, MD, FAAHPM, the Helen Diller Family Chair in Palliative Care, is a Professor of Clinical Medicine and Urology at UCSF. He is the Associate Chief of Education & Mentoring in the Division of Palliative Medicine in the Department of Medicine, and the Medical Director of Palliative Care at UCSF’s Helen Diller Family Comprehensive Cancer Center (https://cancer.ucsf.edu/people/profiles/rabow_michael.3627). Board-certified in internal medicine and hospice & palliative care, Dr. Rabow directs a leading outpatient palliative care program-- the Symptom Management Service. In addition, Dr. Rabow is a member of UCSF’s Academy of Medical Educators and is the Founding Director of the MERI Center for Education in Palliative Care at UCSF/Mount Zion (https://meri.ucsf.edu). Dr. Rabow was the winner of the 2017 AAHPM PDIA National Palliative Care Leadership Award. He is a past recipient of the Soros Project on Death in America award and the Hastings Center Cunniff-Dixon Physician Award.
Professor Gary D. Rogers is a health professions educational leader, public health researcher and GP with a focus on HIV medicine. He commenced as Professor and Dean of the School of Medicine at Deakin University in June 2020. Immediately prior to joining Deakin, he was Professor of Medical Education and Deputy Head of School (Learning & Teaching) at the Griffith University School of Medicine, as well as undertaking clinical work in the Infectious Diseases Unit at Gold Coast University Hospital. Gary gained his medical degree from the University of Adelaide 1984. In the early 1990s, he formulated and led an interprofessional primary health care team focused on HIV care and prevention in the city of Adelaide. Whist still in full-time clinical practice, he undertook the Monash University Master of General Practice Psychiatry in order to gain the skills he needed to support the survivors of the HIV pandemic following the implementation of effective treatment for the condition in the 1996. In the mid-2000s he completed a PhD in public health utilising a health inequity framework and then worked for two years across the 21 Pacific Island countries and territories in HIV care mentorship and sexual health promotion. Since joining Griffith University in 2008, Gary’s scholarly work has focused on health professional education. He is a former President of the Australian and New Zealand Association for Health Professional Educators (ANZAHPE) and continues to serve on the Association’s Fellowship Committee. He was a member of the Executive Committee of AMEE, the international association for health professional education, from 2013 to 2019. In 2017, he was recognised as a Principal Fellow of the global Higher Education Academy. Gary’s current research focuses on the affective learning associated with the acquisition of professional and interprofessional values among health students.
Rick Davis is a serial social entrepreneur with a background in finance and real estate and educated at Universities of Manchester (UK) and Chicago. He was diagnosed with locally advanced prostate cancer in 2007. It was readily apparent there was inadequate support for men placed on hormone therapy, and Rick started to advocate to remedy that. He also participated in prostate cancer support groups and recognized not only their value, but also that availability was geographically, physically and socially limited. Remote virtual support groups appeared to resolve many of those constraints. That started him down a path that has led to becoming a nationally recognized patient advocate.
At the same time, Rick was also working on integrating exercise in treatment protocols. When diagnosed Rick had found little support for exercise at either of his treating institutions, Kaiser Permanente or UCSF. A lifelong endurance athlete, he was intimidated facing more than 2 years of depleted testosterone on hormone therapy. Rick also realized that if he was struggling as an ‘addicted’ exerciser, what about those diagnosed who had never exercised before. Working with his treating doctors at UCSF, they initiated a highly successful exercise support system. MedaFit is the effort to extend that program.
In 2016 Davis and two others incorporated Answer Cancer Foundation d/b/a AnCan as a 501c3 to formalize their advocacy, navigation, education and support efforts. Originally proven in prostate cancer, AnCan has now expanded to 11 conditions hosting (soon to be) 30 monthly video chat support groups and occasional webinars drawing over 500 attendees. AnCan now addresses more than cancer with groups for MS, sarcoidosis and lupus. AnCan’s predecessors were the first to innovate peer-led video chat virtual support back in 2015.
Hala Durrah, MTA, is an independent patient family engagement consultant and nationally recognized advocate. Her passion for patient family engagement work stems from her experience as a mother of a chronically ill child who has undergone two liver transplants and a bone marrow transplant. As an expert in patient partnership and engagement, she serves as a consultant on a number of projects focused on patient centered measurement, quality improvement, patient safety, health equity, child health, healthcare transformation, health IT, patient partnered research, and patient experience. She serves on a number of national committees and boards, most recently being elected to American Board of Emergency Medicine as their first public member director. Ms. Durrah recently founded Patient Advocates Transforming Healthcare (PATH), a diverse coalition of independent patient/family/caregiver/community engagement leaders seeking to transform healthcare through our collective experiences and expertise. This passionate group of leaders seeks to reimagine healthcare and create an equitable role for patients, families, caregivers and communities.
https://www.healthaffairs.org/doi/10.1377/hlthaff.2018.05012 https://www.medscape.com/viewarticle/919244
Kent Annan is author of You Welcomed Me: Loving Refugees and Immigrants Because God First Loved Us (forthcoming, November 2018), Slow Kingdom Coming (2016), After Shock (2011), and Following Jesus through the Eye of the Needle (2009). He is director of humanitarian and disaster leadership at Wheaton College, where he leads an M.A. program as part of the Humanitarian Disaster Institute. He’s on the board of directors of Equitas Group, a philanthropic foundation focused on ending child exploitation in Haiti and Southeast Asia. He cofounded Haiti Partners. And he’s a senior consultant for Development Associates International, which trains Christian leaders around the world.
As CEO and Founder of Reveles Clinical Services, R’Kes has over 18 years providing high-touch pharmacy services, clinical reach operations, specialty drug distribution, and clinical management to patients with rare and complex diseases such as Chronic Kidney disease, Cancer, Hemophilia and Cystic Fibrosis. Prior to founding Reveles, R'Kes headed up the Specialty Pharmacy and Clinical Research Service business at McKesson, which is a “central depot” that provides investigational product distribution, accountability, and storage for the US Oncology Network. R'Kes oversaw a multi-disciplinary clinical research team that was involved in over 130 active oncology-focused clinical trials and responsible for delivering over 50,000 annual shipments of investigational products, laboratory kits, and clinical supplies to the US Oncology network sites across the United States. Prior to McKesson, as the Vice President of Operations, he previously oversaw eight Home Infusion specialty pharmacies in six states with Coram CVS Specialty Infusion Services, which has translated into R'Kes having in-depth experience and knowledge of providing direct-to-patient care for thousands of patients on commercialized medications with complex and rare diseases in their homes.
Prior to Coram, R’Kes held a variety of management roles with DaVita, Inc., a Fortune 500 Dialysis services provider. Before the dialysis industry, Mr. Starling has worked in the retail pharmacy operations management at Wal-Mart, Sam's Club, and Target Stores. Additionally, R'Kes have consulted and worked collaboratively with over 30 biopharmaceutical companies on pre-launch to commercialization development, launch strategies, and patient access programs for new specialty pharmaceutical therapies. R’Kes received his Bachelor of Science in Pharmacy from Purdue University and his Executive MBA from Kellogg School of Management, Northwestern University.
Dr. Bassin is part of a team that has concluded that the COVID-19 pandemic has created many stressors and challenges across all levels of low to highly resourced health systems. However, it has also shown the incredible number of opportunities for innovation, ingenuity and system re-engineering. We think it is time to support a paradigm change and advocate for healthcare’s next big investment: intentional and embedded partnerships between clinicians, designers, and architects with dedicated resources to ensure an effective collaborative environment to help solve healthcare’s greatest challenges. In this conversation with Moyez Jiwa they outline their case for this conclusion.
Amy Ma has been a part of the Montreal Children’s Hospital’s Family Advisory Forum since 2013, and currently serves as its co-chair. Her experience as a parent of a child with a health issue motivates her to harness patient and family voices as a force for positive change in the healthcare system. Ms Ma actively collaborates with the hospital ombudsman, administrators and clinicians to bring about improvements to quality and service. She has an interest in maternal health, diversity and inclusion, and health equity.
Ms Ma has developed and maintained connections to families and patient advisors across Canada, with her involvement in the Patient Advisory Network, Choosing Wisely Canada, L’Appui Montreal (caregiver advocacy), Nourish (environmental nutrition), and a community of practice on patient partnership led by the University of Montréal.
Prior to this, Ms. Ma held positions in fundraising with McGill University. She lives in Montreal with her husband and three teenagers.
LinkedIn: https://www.linkedin.com/in/amy-ma-ctzenimprover/ Twitter: @Ctzen_Improver
Approaching life and the practice of medicine with love and respect, Michael D. Fratkin,MD is a builder, an innovator and a dreamer. (Not necessarily in that order.)
Standing on a foundation of inspiration and burnout, Dr. Fratkin began creating ResolutionCare Network to build capacity for capable and compassionate palliative care in the rural Northern California community in which he made his home. He has been a transformative and provocative voice for improving the experience of people and families facing the completion of their lives while ensuring that the meaningful professional experiences of those providing care is of equal importance. Furthermore, ResolutionCare Network is revolutionizing healthcare enterprise development as a Certified B Corp launched with a crowdfunding campaign and using technology to connect people to people wherever they are.
Dana serves as an Executive Board Member of ECAN, is a Patient Representative on the Locally Advanced Esophageal Cancer Guideline Panel for the American Society of Clinical Oncology (ASCO), a member of NCI Patient Advocate Steering Committee and NCI Esophago-Gastric Task Force and serves on the Esophageal and Stomach Cancer Project Patient Advisory Committee, a project led by the Broad Institute of MIT and Harvard. After many years as a caregiver to family members and surviving her own health crisis, Dana thrives on improving and empowering patient communication and connections to drive better health outcomes.
Vanessa is an e-Patient Scholar at Stanford University Medicine X as well as antibiotic resistance and one health activist. She established Healthcare Communications and Social Media South Africa in 2013 which started as a Twitter chat to discuss sustainable health development. Vanessa also created the first CPD course in South Africa about e-Patients accredited by the South African Medical Association (SAMA) and has further provided training to various organisationsincluding the National Institute of Communicable Diseases (NICD) and the Africa CDC.
ntermountain Healthcare in Utah. He received his medical degree, completed his internal medicine residency, and served as chief resident at Baylor College of Medicine in Houston, Texas. After completing a hematology/oncology fellowship at the Mayo Clinic in Rochester, Minnesota, he returned to Houston to work at the MD Anderson Cancer Center for four years, with a dual appointment in general & gastrointestinal medical oncology. He is also the co-chair of adolescent & young adult (AYA) oncology in the SWOG cooperative group, currently serving a five-year term in that position.
During his training he self-diagnosed with multiple endocrine neoplasia type 1 (MEN1) and thus has a particular & deeply personal interest in hereditary tumor syndromes. Additionally, he is passionate about advocacy & research for GI cancer, social media in oncology, and patient-clinician communication.
Barbara Karnes, RN, is an internationally recognized author, speaker, thought leader and expert on end of life care and the dynamics of dying. Barbara was recognized in 2018 as a Hospice Innovator by the National Hospice and Palliative Care Organization and was named the 2015 International Humanitarian Woman of the Year by the World Humanitarian Awards.
Carly Flumer was diagnosed with stage I papillary thyroid cancer at the age of 27 while earning her Master’s degree. While being diagnosed with cancer at a young age was terrifying, she found strength and support in sharing her cancer journey on social media through both the written word and visual imagery. As a result of her diagnosis, she looks to advocate for other cancer patients, especially adolescents and young adults, through education, research, and health literacy.
Bo Bigelow is the chairman of the Foundation for USP7 Related Diseases (usp7.org). He and his wife are the parents of two children, one of whom, Tess, has an ultra-rare genetic disorder. Bo has blazed new trails in advocating for people with undiagnosed diseases. Upon learning that Tess had a mutation in her USP7 gene, Bo and his wife believed that she was the only one of her kind in the world. But he wrote a blog post about Tess, took to social media, and within 24 hours discovered a team of researchers who were working on the USP7 gene and the disorder that Tess has. Tess was the eighth known patient in the world. Through his podcast and blog Stronger Every Day, since 2015 Bo has helped build their patient group to seventy cases worldwide. To find more patients, he made a short film called "Tess Is Not Alone: A USP7 Story." He and his wife started their foundation in 2017. Their mission is to cure USP7 related diseases. Bo is also a co-director of DISORDER: The Rare Disease Film Festival and is of counsel to Murray, Plumb and Murray in Portland, Maine.
Dr. Sunita Puri is the Medical Director of the Palliative Medicine Service at Keck Hospital and Norris Cancer Center of the University of Southern California, where she also serves as Chair of the Ethics Committee. Sunita is the author of That Good Night: Life and Medicine in the Eleventh Hour, a critically acclaimed literary memoir examining her journey to the practice of palliative medicine, and her quest to help patients and families redefine what it means to live and die well in the face of serious illness. Sunita received writing residencies at the MacDowell Colony, UCross Foundation, and Mesa Refuge, and was a finalist for the PEN Center's Emerging Voices Writing Fellowship. The recipient of a Rhodes Scholarship, her writing has appeared in the New York Times, the Los Angeles Times, Slate, and the Journal of the American Medical Association. In 2018, she was awarded the Etz Chaim Tree of Life Award from the USC School of Medicine, awarded annually to a member of the faculty who, in the eyes of the campus community, models and provides humanistic and compassionate care.
Anu was born in New Zealand and earned her medical degree at the University of Auckland School of Medicine. She worked with international non-governmental organization programs for child health and disaster relief before coming to New York City in 2002, where she trained in Pediatrics, Global Health and Public Health at the Icahn School of Medicine at Mount Sinai. Anu went on to train in Tropical and Travel Medicine at Universidad Cayetano Heredia in Peru, to work with the NYC Department of Health on pediatric tuberculosis, and to become the Director of Global Health Education at the Icahn School of Medicine at Mount Sinai. In 2017, Anu created Women Together Inc. (www.womentogetherglobal.com) supporting grassroots women’s groups in eastern Africa to travel, meet, and exchange income-generating skills. In 2018, Anu became the Director of the Office of Wellbeing and Resilience at The Icahn School of Medicine at Sinai.
Marie DeLuca is an emergency medicine doctor and research fellow in New York, NY. They are an organizer for Doctors for Camp Closure, a network of over 2,500 healthcare workers advocating for human rights and healthcare for asylum seekers and the undocumented community in the US.
Kimberly Richardson - seven year cancer survivor of ovarian cancer, Granulosa Cell Tumor, Stage 3A. Prior to diagnosis, Ms. Richardson has 25 years of urban planning and community economic development experience. Accomplishments included creating a TIF district for the development of a major hotel and restaurants; rehabilitation and new construction of single family and multi-family housing units; and revising suburban business and housing code enforcement zoning ordinances. Ms. Richardson has been active since treatment in various forms of advocacy. As an advocate leader for the Ovarian Cancer Research Alliance (OCRA), she speaks with legislators on the importance of funding for ovarian cancer research, has crafted state legislation for an Illinois gynecologic cancer commission and has spoken at the national conference on patient advocacy. In her advocacy role with DoD/CDMRP/OCRP, she is both a pre and peer reviewer and contributing writer to the agency’s patient advocacy blog GLOBELTHON. She shares her perspective on disparities in genetic testing and clinical trials through multiple platforms and hosted citywide events in partnership with FDA’s Oncology Center of Excellence and CISCRP to increase minority participation. Ms. Richardson currently works with local elected officials and community based groups on health equity surrounding COVID19 and has shared her perspective as a cancer patient and advocacy partner with WCG. She has developed a program model called Survivors Advising Scientists that include training modules on basic scientific inquiry for survivors and new patient advocates that will be showcased at this year’s virtual ASCO conference.
Dr. Charles Camarda retired from NASA in May 2019, after 45 years of continuous service as a research engineer and technical manager at Langley Research Center (LaRC), an Astronaut and Senior Executive (Director of Engineering) at Johnson Space Center (JSC), and as the Senior Advisor for Innovation and Engineering Development at LaRC.
Baktash Ahadi is the founder of Taleem, a strategic communications company. He is also the creator and host of the Stories of Transformation podcast. The tragic events of 9/11 set him on a path of examining why people do what they do. Upon graduation from college, he decided to serve in the Peace Corps as an educator in a rural village in Mozambique. His father learned English from a Peace Corps Volunteer in Kandahar in the 1960s and that experience was the inspiration for his family to come to the United States. After completing his service in the Peace Corps, Baktash went back to Afghanistan, the country of his birth, to serve as a combat interpreter and cultural advisor for three years supporting military and reconstruction efforts throughout the country. This life-changing experience put his Afghan-American identity on the front line on the War on Terror in Afghanistan. After his service in Afghanistan, Baktash produced and translated a number of award-winning documentary films about free speech, photojournalism, the refugee crisis, and violence against women. He writes, speaks, and teaches regularly about individual, organizational, and societal change. He holds degrees from The Johns Hopkins University and Susquehanna University.
Marina Ness, MPH is a public health professional with experience in pharmaceutical market research, healthcare data management, and health policy analysis. As the Director of Research at Inspire, Marina leverages research expertise in a wide range of health domains, including oncology, rare disease, mental health, women’s health, sustainability and environmental health, public health emergency management, and epidemiology. Marina’s research background involves both qualitative and quantitative data analysis and visualization, as well as the generation of actionable insights for national-level public health crises.
Andrew completed medical school at Mount Sinai, residency in internal medicine at Columbia, and a master of public health degree from Harvard as part of the Reynolds Fellowship in social entrepreneurship with the Center for Public Leadership. He previously worked developing non-profit programs on civic engagement and for community health workers. Now Andrew is an assistant professor of medicine at NYU, doing primary care at Bellevue half time. This includes intensive primary care for people experiencing homelessness. His other time is dedicated to medical activism and organizing. This work has been on healthcare access, climate crisis, gun violence prevention, immigrant persecution, and ending inequity and abuse within the healthcare system. The main focus, aside from any specific issue, has been on civic habit building, election action, narrative shifting, escalated tactics like civil disobedience and protest, and health worker organizing. This has been with groups he founded like Progressive Doctors and On Call for Democracy, and others he has supported, like NY Doctors, Doctors for Bernie, and Equity Now Sinai
Dr. Karen L. Smith, native of rural Maryland, is a Family Physician with private solo practice in the rural community of Raeford, North Carolina.Recognizing the needs of her patient population reached beyond the exam room, Dr. Smith became involved with the North Carolina Academy of Family Physicians as well as the North Carolina Medical Society where she served in all levels of the NCAFP with subsequently becoming president of the organization in 2005 and currently serves as the delegate to the American Academy of Family Physicians. Dr. Smith is recognized as North Carolina Family Physician of the year in 2016 and American Academy of Family Physician of the year in 2017.
Deborah Heiser, PhD holds a degree in Applied Developmental Psychology with a specialty in redefining what being older looks and feels like. She has a 20 year track record of award winning research, presentations and consulting and is Founder of The Mentor Project.
Dr. Celine Gounder is an HIV/infectious diseases specialist, internist, epidemiologist, journalist, and filmmaker. In this podcast she discusses the Covid pandemic.
Moyez brings experience from multiple roles- clinician, researcher, publisher, innovator and leader. What this experience has taught him is that healthcare professionals can achieve great results by focusing on what is in their immediate sphere of influence. In some of his roles, the only thing he gets to choose is the colour of his tie. Conventional medicine is all about science, proof, tests, research, grants, hospitals, teams, appointments and data. It’s expensive and slow. He explores solutions to these challenges in his book The Art of Doctoring which was published in Jan 2020.
Haddox, Chris Assistant Professor of Interior Design & Design Studies. Chris Haddox, PhD, is an Assistant Professor of Sustainable Design at West Virginia University where his teaching efforts revolve around the minor in sustainable design—a robust program he created while a visiting assistant professor at WVU.
Annie Brewster is an Assistant Professor at Harvard Medical School and a practicing Internist at Massachusetts General Hospital, Boston. She is also a patient, diagnosed with Multiple Sclerosis in 2001. She has been collecting and sharing patient stories since 2010. In 2013, she founded Health Story Collaborative, a nonprofit organization committed to empowering patients and their loved ones, building community, strengthening patient-provider connections, and ultimately transforming healthcare through storytelling.
Neil Baker M.D. helps healthcare leaders identify and remove barriers to improvement and innovation by linking results, relationships, and culture in their actions moment-to-moment in the midst of daily work.
Michael Bungay Stanier is the founder of Box of Crayon, a learning and development company that helps organizations transform from advice-driven to curiosity led. Michael has written a number of books. His last, the Wall Street Journal bestseller The Coaching Habit, has sold over half a million copies and been praised as one of the few business books that makes people laugh. His new book, The Advice Trap, will be published in February 2020. More here: TheAdviceTrap.com
Chief Evangelist at BombBomb, host of The Customer Experience Podcast, and coauthor of Rehumanize Your Business, Ethan’s collected and told personal video success stories in hundreds of blog posts, in dozens of webinars, podcasts, and stage presentations, and in countless conversations. He spent a dozen years leading marketing inside local television stations in Chicago, Grand Rapids, and Colorado Springs. His undergraduate and graduate degrees from the University of Michigan and UCCS in communication, psychology, and marketing were conferred with highest distinction.
Mark Glover joined Medidata in December 2018 and is the Country Manager Australia and New Zealand, based in Sydney. Mark brings a broad and deep based experience in healthcare, pharmaceutical, medical devices and SaaS industries across Australia, New Zealand, the UK and Asia. He has held executive roles with a diverse range of companies, including Managing Director for iNova Pharmaceuticals, Managing Director Allergan Australia/New Zealand, and General Manager of Serono. His experience spans a broad spectrum of companies, channels, products and services, including start-ups and biotech & medical device companies, through to FMCG, OTC and large pharmaceutical, together with consulting. Mark is passionate about the healthcare industry in all its facets. He has been an active industry contributor, having been a member of AusBiotech, Medicines Australia (including on the Board), Medical Technology Association of Australia, ARCS and ASMI. Mark is focused on patient outcomes driven through digital engagement and transformation with healthcare professionals, patients and consumers.
Lee Davy is someone that doesn't drink alcohol. He is not an alcoholic, he refuses to be anonymous and spends every waking moment helping other people be the same through his podcasts, coaching, online courses, and Strive community.
Eric LoMonaco is the director of Diagnostic and Interventional Radiology at Community Hospital, a position he has held since 2006. Prior to that, Eric served for 4½ years as assistant director of Radiation Oncology.
The author or editor of twelve books, including Zarathustra in Paris: The Nietzsche Vogue in France, 1891-1918 (2001), The Dreyfus Affair and the Crisis of French Manhood (2004) and Masculinity in the Modern West (2008), his most recent book is Fat: A Cultural History of the Stuff of Life (London: Reaktion, 2019). His current book project is tentatively entitled Life is Elsewhere: Feeling Alive in the Modern World.
Randi Redmond Oster is the multi - award winning author of Questioning Protocol, which helps patients navigate the healthcare system and medical professionals understand the patient perspective. She is a nationally acclaimed speaker on healthcare reform, shared decision making and patient engagement.
Randi Redmond Oster is the multi - award winning author of Questioning Protocol, which helps patients navigate the healthcare system and medical professionals understand the patient perspective. She is a nationally acclaimed speaker on healthcare reform, shared decision making and patient engagement.
Jerald Winakur, MD, MACP graduated from the University of Pennsylvania School of Medicine, practiced internal and geriatric medicine for 36 years and taught at the The Center for Medical Humanities and Ethics for 18 years at UTHealth—San Antonio. His book, “Memory Lessons—A Doctor’s Story“ (Hyperion, 2009), relates the journey through Alzheimer’s Disease he took with his father. He has also written a volume of poetry, “Human Voices Wake Us,” in the “Literature and Medicine” series published by Kent State University Press (2017).
Sakib is a design researcher with expertise in persuasive design and business innovation strategies. He is a thinker, writer, consultant, analyst and strategist with more than 16 peer-reviewed scientific articles. Scholarships obliged him to live and research in Thailand, Singapore, Spain, Australia and the USA. At each place, he started with a blank mind and immersed himself in the culture and language. These life skills in his practice to better understand humans and all that matters; he is a techno-ethnographer. Sakib won a medal of excellence in his PhD external exam. During his postdoctoral appointment in University of California Davis he was invited to speak at the Congresswoman Doris Matsui’s office.
As the National Director of the HAMES SHARLEY Health Portfolio, Warren has used his qualifications in architecture and health administration to specialise in hospital design.
A serial social entrepreneur, Shannon Weber MSW has launched sexual health initiatives impacting thousands. She believes we thrive at the intersection of empathy and resilience.
Dr. Celine Gounder is an HIV/infectious diseases specialist, internist, epidemiologist, journalist, and filmmaker. Dr. Gounder is a Clinical Assistant Professor of Medicine at New York University. She’s currently on an "ill-health tour" of the US, caring for patients in disease hotspots throughout the country... everywhere from NYC's Bellevue Hospital to Indian reservations to Appalachia
Glen is the President and Co-founder of Medidata Solutions, the leading cloud platform for life sciences research. Glen has been driving Medidata's mission since the company’s inception in 1999: Powering smarter treatments and healthier people. His publications have appeared in Applied Clinical Trials, Cancer, The Journal of Urology, Molecular Diagnostics, STAT, Urologic Clinics of North America and TechCrunch. He is a trustee of Carnegie Mellon University, a Columbia HITLAB Fellow, and a member of the Healthcare Businesswomen’s Association European Advisory Board.
Diana Anderson, MD, M.Arch. As a “dochitect”, Diana combines medicine and architecture. Through research, project work and speaking engagements, she explores the impacts of healthcare design on care delivery and outcomes.
Author of the book ' The Waiting Room Cure.' Speaks with Moyez Jiwa about the impact of the interior design of medical facilities on outcomes in healthcare.
Andrew is a regular contributor in the media. Media credits include articles and commentary in the Financial Review, The Australian, The Sydney Morning Herald, The Daily Telegraph and various magazines. He has a weekly column in the Australian “Q&A with the Coach”. He regularly pops up on commercial and pay TV discussing personal finance for the mainstream consumer. Andrew has judged the Telstra National Small Business Awards and the FPA Value of Advice awards.
John has introduced a range of new programs and technologies to the NZ health sector that are now having an impact nationally and in some cases internationally. He now leads Ventures for the Pinnacle group which is managing the what’s next and what’s after what’s next thinking for Pinnacle. Ventures manages all the ownership and management of the practices owned within the Pinnacle group which is a growing business. Ventures is also establishing new partnership with industries outside the health sector to explore and develop new models and approaches for primary care and importantly to better meet changing consumer and patient needs
Dr Fiona Kerr is an adjunct with the University of Adelaide. She has a PhD in complex systems engineering and cognitive neuroscience, augmented by degrees in psychology and anthropology. at the University of Adelaide she She has collaborated with the Faculty of Health Sciences to examine the neurophysiological impact of human interaction on healing and the therapeutic relationship; and with the Faculty of Engineering on the interaction between humans and trusted autonomous systems for Defense.
Stephen Trzeciak, MD, MPH is a physician scientist, Chief of Medicine at Cooper University Health Care, and Professor and Chair of Medicine at Cooper Medical School of Rowan University in Camden, New Jersey.Currently, Dr. Trzeciak’s research is focused on a new field called “Compassionomics”, in which he is studying the scientific effects of compassion on patients, patient care, and those who care for patients. He is an author of the best-selling book: Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference. Broadly, Dr. Trzeciak’s mission is to make health care more compassionate through science. Dr. Trzeciak is a graduate of the University of Notre Dame.
Ronald Epstein MD -- family physician, teacher, researcher and writer -- has devoted his career to understanding and improving patient-physician communication, quality of care, and clinician mindfulness. Dr. Epstein directs Mindful Practice Programs at the University of Rochester where he is Professor of Family Medicine, Psychiatry, Oncology and Medicine (Palliative Care). He is recipient of numerous lifetime achievement awards relating to communication and humanism, and has published over 250 articles and book chapters. His first book, Attending: Medicine, Mindfulness and Humanity, was released in January 2017.
Barbara Hirsch, MD, MS, FACE, is an endocrinologist, partner, and the director of diabetes education programming at North Shore Diabetes and Endocrine Associates in New Hyde Park, New York. Dr Hirsch is also a clinical assistant professor in the Department of Medicine at the Donald and Barbara Zucker School of Medicine at Hofstra University.
Patricia(Tia) Powell MD Dr. Powell is Director of the Montefiore Einstein Center for Bioethics and of the Einstein Cardozo Master of Science in Bioethics program. She is Professor of Epidemiology, Division of Bioethics, and Psychiatry. She focuses on bioethics issues related to public policy, dementia, consultation, end of life care, LGBT people, and public health disasters. She served four years as Executive Director of the New York State Task Force on Life and the Law, which functions as New York State’s bioethics commission.
Prof. John Fox is based at Oxford University. He is a cognitive scientist interested in human and artificial intelligence. He works on reasoning, decision-making and planning, and on sound, scientifically grounded design of technologies to carry out these tasks in complex domains.
Jag is a Melbourne-based family doctor and medical adviser in healthcare technology. His interest lies in the leadership task of opening up mindsets and encouraging innovation. @medtechdoc https://au.linkedin.com/in/jsdhaliwal
Dr. Chiang is currently an Assistant Professor of Medicine at Jefferson Health (Thomas Jefferson University Hospitals) in Philadelphia, PA, and serves as the Director of the Endoscopic Weight Loss Program and Chief Medical Social Media Officer for the health system. Consistently one of the most influential voices in the field of gastroenterology online, Dr. Chiang has conducted extensive research in social media and is champion of physician presence on social media and is the Chief Medical Social Media Officer of Jefferson Health and Founding President of the Association for Healthcare Social Media (AHSM), the first 501(c)(3) professional society for health professional social media use.
Glenn Llopis (pronounced ‘yō-pēs) is the Chairman of GLLG, a workforce development and business strategy consulting firm. He is the bestselling author of the books The Innovation Mentality and Earning Serendipity. He is a senior advisor and speaker to Fortune 500 companies, and organizations in healthcare, retail, consumer packaged goods and beyond. In August 2019, he will be introducing his forthcoming book, Leadership in the Age of Personalization. Glenn is a contributing writer to Forbes, Harvard Business Review, Entrepreneur Magazine and Huffington Post.
Sam Mazin is the cofounder and chief technology officer at RefleXion Medical and inventor of the company's core technology. While a Postdoc in Radiology at Stanford University, Sam was selected by the Kauffman Foundation as one of thirteen postdocs in the nation to commercialize promising innovations. His prior research at Stanford was focused on the design of a novel X-ray computed tomography (CT) system, resulting in several journal papers and a patent, as well as the Joel Drillings Award from the American Heart Association.
Amy Willans is an award-winning mental health advocate, Peer Support Worker, and author who lives and works in Edmonton, Canada. She is co-creator of Fighting Normal, a multi-discipline art installation that explores the stigma surrounding mental illness; and a public speaker who uses her personal story of living with schizoaffective disorder to affect positive social change.
Ian Hargraves PhD is a designer, shared decision making researcher, and assistant professor of medicine with the Mayo Clinic Knowledge and Evaluation Research Unit in Rochester Minnesota. Originally from New Zealand where he trained as an industrial designer at Victoria University Wellington, Ian holds a Masters and Ph.D. in design from Carnegie Mellon University, Pittsburgh, USA. At the Mayo Clinic, Ian leads the human-centered design of shared decision making interventions developed to support the conversations in which patients and clinicians think, talk, and feel through medical decisions together
Marion Mass attended Penn State University, Duke Medical School and did her training in pediatrics at Northwestern’s Robert Lurie Children’s Hospital. She has worked in the hospital, ER, nursery, delivery room, outpatient practice, and urgent care settings. She twice run non-partisan symposiums on Medical Care at the Library of Congress in Washington DC. Most recently at the free to care conference on April 1, 2019. Marion is the winner of the 2018 R William Alexander Award , recognized by her Pennsylvania peers as contributing heavily to political advocacy in healthcare, and in addition is a Pa Medical Society delegate.. She founded Practicing Physicians of America with Dr. Westby Fisher, M.D., of Chicago in 2017. She and her husband Stephen C. Mass, M.D., an otolaryngologist have practiced in Bucks County for over 20 years.
A graduate of Harvard Medical School, Marc previously conducted research in medical devices at MIT and is currently a physician at the Massachusetts General Hospital. He created 2 Minute Medicine during his medical training years as a way to keep current with high-impact medical literature while researching in a lab away from the hospital.
Jake Poore is President and Chief Experience Officer of Integrated Loyalty Systems, a company whose mission is to elevate the human side of healthcare.
J. Lloyd Michener, MD, is Professor of Community and Family Medicine, Director of the Duke Center for Community Research, and Clinical Professor in the Duke School of Nursing. He co-chairs the Community Engagement Steering Committee for the Clinical Translation Science Awards of the NIH, and is a member of the Board of the Association of American Medical Colleges[AT2] . Dr. Michener is Past President of the Association for Prevention Teaching and Research and received the APTR Duncan Clark Award in 2013. He is also a past member of the Institute of Medicine Committee that led to the publication of “Primary Care and Public Health: Exploring Integration to Improve Population Health.” Dr. Michener is a steering committee member and principal investigator for The Practical Playbook.
Deborah C. Peel, MD is the Founder & President of Patient Privacy Rights and the world’s leading advocate for patients’ rights to control the use of personal health information in electronic systems. She is also a practicing physician and Freudian psychoanalyst. She became an expert and privacy warrior to stop patients from being harmed.
Deborah Heiser, PhD holds a degree in Applied Developmental Psychology with a specialty in aging. She has a 20 year track record of award winning research, presentationg, consulting and coaching.
Maggie is the director of The Patient Revolution, an action and advocacy movement for careful and kind patient care; arming patients, clinicians, and the public with the tools, resources and support they need to tell their stories and agitate for change in healthcare. She has spent over a decade as a designer and researcher in the healthcare space, including 7 years at the Mayo Clinic’s Center for Innovation. She teaches in the Design for Social Innovation program at the School of Visual Arts (SVA) in NYC. She has published in journals ranging from Design Issues to Archives of Internal Medicine. Maggie holds a Masters of Design (MDes) from Carnegie Mellon University.
Stephen Brown, MSW LCSW, is a faculty member and Director of Preventive Emergency Medicine in the Department of Emergency Medicine at the University of Illinois Hospital and Health Sciences System (UI Health). He earned his first degree in business marketing in 1984 from Northern Illinois University. During the next 13 years, he worked at Motorola’s Computer Systems Division as systems engineer, account executive, and product marketing manager. In 1998, he went on sabbatical to complete a second undergraduate degree in psychology at Northwestern University and a Master of social work at Loyola University.
Dr. Victor Montori is Professor of Medicine at Mayo Clinic. He is a practicing endocrinologist, researcher, and author and a recognized expert in evidence-based medicine and shared decision-making. Dr. Montori developed the concept of minimally disruptive medicine and works to advance person-centered care for patients with diabetes and other chronic conditions. He is the author of Why We Revolt – a Patient Revolution for Careful and Kind Care.
Christopher Shaw is a specialist consultant in mental health design, and has over 28 years’ experience in healthcare architecture. He enjoyed long involvement with the Medical Architecture Research Unit (MARU) at the now London South Bank University prior to founding Medical Architecture in 1991, where he has since driven the global growth of the company. A passionate advocate for evidence based design, significant elements of his day-today work involve the research and evaluation of healthcare buildings in the UK and worldwide. A particular area of Christopher’s expertise lies in strategic health planning to enable design for the enhancement of clinical outputs and the human experience of medical care.
Helen Parker, Director of Strategic Development, Pinnacle Ventures, New Zealand. Helen Parker’s UK clinical, managerial and academic career in health care spanned 30 years. After a career in district nursing and practice nursing, Helen spent some years developing and managing NHS integrated community services as a Director on Primary Care Trusts. She was also a member of the Department of Health Transforming Community Services Board. From 2005-2009 Helen was a Senior Fellow and the Co-Director of the Health Services Management Centre, University of Birmingham focusing on evaluation and research of primary care and integrated care models across developed health systems. Before moving to New Zealand late 2013, Helen was involved in the early design and implementation of Super Partnerships, new models of care and ownership models for general practice and was a senior fellow with the health think tank The Nuffield Trust, UK. Since joining Pinnacle Helen has been leading the strategic development, implementation and evaluation of the Health Care Home and working on Health Care Home #2 innovations. Alongside her registered nurse qualification Helen has a BSc in Community Health, a Masters degree in Primary Care Policy and Management and is a qualified executive coach.