Two Disabled Dudes - Living with Urgency: Recent Episodes
Kyle Bryant, Sean Baumstark
The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast.
Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance bike rides including “The World’s Toughest Bike Race” - Race Across America (RAAM). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.
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In the final episode of season 13, after a brief discussion about dog poop DNA, Kyle and Sean reflect on how their priorities, perspectives, and self-image have evolved over time. From awkward teen years and early adult panic to working through tough moments, they explore the power of hindsight and personal growth. The conversation dives into public misperceptions of disability, body image struggles, and the ways they’ve learned to let go of what doesn’t matter. They wrap up with gratitude for a supportive coach and a powerful book recommendation that’s reshaping how Sean thinks about leadership and service.
Links and Resources
- Unreasonable Hospitality
In Episode 276, Kyle kicks things off with a brunch story involving an oversized, impossible-to-handle coffee mug and a series of well-intentioned but clumsy attempts to make it right.
The episode then shifts gears with a fun and thought-provoking compilation of answers from past guests to the question: If you ruled the world, what would you change? Responses range from practical ideas like increasing accessibility and reducing barriers, to grand visions of kindness, open science, and even perfect weather in Pennsylvania. Each guest's answer serves as a reminder of how personal experiences shape our view of what the world could be.
The episode wraps up with heartfelt thank-you notes: Kyle expresses his gratitude to all his generous donors by adding each of their names to his fundraising “spirit chain,” while Sean thanks Santino, a colleague who went out of his way to share how much he enjoyed Sean's recent corporate presentation. These moments of appreciation highlight the power of connection and acknowledgment in both personal and community-driven efforts.
This episode is a reminder that even small gestures can have a world-changing impact.
Links and Resources
- Katie, Team Telomere
- Heidi, Association for Creatine Deficiencies (ACD)
- Jay, Write on, Fight on
- Rivki, CTNNB1 Connect & Cure
- Kendall, Icon
- Erin, Rea of Hope
In this episode, Sean and Kyle kick things off with a nostalgic dive into Kyle’s latest midlife hobby—collecting Sacramento Kings basketball cards from the early 2000s. What began as a simple eBay gift for his nephew spiraled into a full-on tribute to his college years, complete with prized cards now stashed in a personal safe. The dudes banter about their shared sports memories, the glory days of Bibby and Weber, and how even Shaq’s son is now playing ball in Sacramento. It’s a fun and lighthearted reminder that small joys—like cheap sports memorabilia—can spark big waves of meaning.
But the real heart of the episode comes from a face-to-face conversation with longtime friend Katie Stevens, executive director of Team Telomere. Katie opens up about her personal journey as a rare disease mom and how her experience shaped her leadership in the nonprofit space. She shares how Team Telomere has grown from a volunteer-run effort into a structured, strategic organization—with an eye on both care and cure. From care packages and community trust to groundbreaking research and a clinical trial aimed at treating telomere biology disorders, Katie gracefully bridges the science and the soul of rare disease advocacy.
With honesty, wit, and wisdom, Katie reminds us that hope isn’t just a word—it’s a community, a strategy, and a force for action. Whether you’re in the trenches or working toward a cure, this episode delivers powerful insight into what it takes to lead with heart and keep moving forward.
Links and Resources
- Team Telomere
Sean kicks things off with an update on his long-standing Starbucks habit, revealing surprising progress in cutting back—even if a freshly remodeled store briefly pulled him back in. It’s a light and honest moment that sets the tone before shifting into something deeper: a conversation with Brett Brackett, former NFL player and current president of Uplifting Athletes.
Brett shares how his journey from the football field to rare disease advocacy has been driven by compassion, purpose, and a desire to give others a reason to hope. He takes us behind the scenes of the Young Investigator Draft—a one-of-a-kind event celebrating rare disease researchers like MVPs—and explains how Uplifting Experiences are creating unforgettable moments for families across the country. From locker rooms to lab coats, this episode explores the power of connection, the importance of genuine care, and the beauty of staying involved in what you love—even when life takes a turn.
Links and Resources
- Uplifting Athletes
- Uplifting Experiences
In this episode, Kyle and Sean get real about what it means when a circumstance such as rare disease forces you to let go of old dreams, grieve unexpected losses, and slowly uncover new paths forward. It’s an honest conversation about redefining fulfillment and learning to live fully — even when life looks different than you imagined.
In classic Two Disabled Dudes fashion, the episode opens with a hilariously painful recounting of bloodwork gone wrong. Kyle survives a multi-day ordeal involving broken systems, pre-dawn wake-ups, and a forgotten ID, while Sean’s appointment gets derailed by a national holiday his lab forgot existed. Moral of the story: get your labs done early—or prepare for a side quest no one asked for.
Things shift from comedy to clinical trials with guest Kendall Davis, a rare disease advocate and engagement strategist who knows how to bridge the gap between pharma and real life. She shares how meaningful patient input—before a trial starts—can make or break its success, and why things like meals, Wi-Fi, and basic communication should never be afterthoughts.
Kendall doesn’t shy away from the big questions either—like why the FDA offers “guidance” instead of hard rules, and how that leaves too much room for interpretation. It’s clear she’s doing the work to make trials more human, but whether the industry will keep up is a cliffhanger we’re still waiting to resolve.
Links and Resources
- ICON
- Team Telomere
In this powerful and heartfelt episode, we sit down with Erin, founder of the Rae of Hope Foundation, to talk about caregiving, community, and what it means to find joy even when life is hard.
Erin shares her family’s journey following her daughter Reagan’s epilepsy and cerebral palsy diagnoses, how caregiving shaped her 30s, and how she’s now carving out space for herself as Reagan becomes more stable. We dive into the real stuff—guilt, resilience, and the healing power of connecting with people who just get it.
Links & Resources:
- Rae of Hope website
- Follow Rae of Hope on Instagram
- Reagan’s Run
In partnership with Jett Foundation, we roll into an inspiring conversation with a powerhouse panel of guests who prove that nothing—not even a ridiculously expensive adaptive wheelchair—can keep them from chasing their dreams. From power soccer to adaptive paragliding (yes, that’s a thing!), our guests share how nonprofits, grants, and a little creative Googling can help make adventure accessible.
But it's not just about the gear—it's about mindset. Whether it’s treating life like a video game (level 29 and counting!), finding joy in teaching, meditating, or simply savoring a slice of pizza, these folks remind us that happiness is about perspective. Challenges? Sure. But as they say, keep moving forward, embrace the highs, and never underestimate the power of a good support system (or a really good cup of coffee).
Special thanks to the Jett Foundation and everyone making life a little more accessible, one grant, goal, and friendship at a time. Keep living with urgency, folks—because the next level is right around the corner! 🚀♿🎉
Links and Resources (mentioned in this episode)
- Jett Foundation
- Cure SMA
- Parent Project Muscular Dystrophy (PPMD)
- Cure Duchenne
- Mass Hospital School
What happens when a teenager asks, “Why are you in a wheelchair?” at the bar... and it’s not weird at all? In this episode, Sean and Kyle reflect on what it means to be curious, considerate, and occasionally oblivious when it comes to disability—and why teens might just be winning in the empathy department. From cruise ship conversations to elevator etiquette, we explore how age, culture, and confidence shape the way people react (or don’t react) to disability.
Then we catch up with our good friend Matt Lafleur—writer, rare disease advocate, and now children’s book author! Matt shares how he turned a lonely diagnosis into a meaningful calling, why vulnerability is hard but necessary, and how a red panda named Professor Hong is helping kids understand life with Friedreich's Ataxia. Whether you're in the tunnel or finally seeing the light, this episode is packed with honesty, encouragement, and a few laughs about mystery garbage collectors.
Links & Resources
- Matt’s Childrens Book
- Matt’s NYT Article
- Matt’s Column
- What Do You Do With An Idea?
Ever feel like your energy levels are on a shoestring budget? In this episode, Sean and Kyle tackle the daily balancing act of managing energy, especially with a rare disease. From the science of sleep hygiene (which, by the way, Kyle has mastered like a bedtime ninja) to the mystery of why spoon theory uses, well, spoons as its currency, they dive into the mental and physical toll of fatigue. They share personal stories of how they’ve learned to prioritize commitments, manage FOMO, and avoid turning into a "pile of poop" at social events. Plus, Kyle admits that yes, a $400 night guard does indeed feel like a tiny hug for his teeth.
But it's not all sleepytime talk—this episode is packed with real-life strategies for handling exhaustion without guilt. They break down how they navigate full-time jobs, social lives, and the ever-present need to rest, all while avoiding the misconception that fatigue equals laziness. The dudes also dish out some wisdom for non-disabled folks on how to be more mindful of invisible energy limitations (hint: holding the elevator for two extra seconds won’t kill you). Whether you’re managing a rare disease or just trying to figure out why you can’t stay awake past 9 PM, this episode is a must-listen. And as always, they wrap up with a dose of gratitude—this time for third graders with surprisingly deep questions and flight attendants who appreciate a good old-fashioned thank-you note.
Also in This Episode:
- Kyle introduces the term “Sleep Hygeine”
Links and Resources
- Spoon Theory
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When it comes to wheelchair repairs, navigating the system shouldn’t be harder than the fix itself—but for Sean, that’s exactly what happened. In this episode, he shares the frustrating saga of dealing with a major medical equipment provider, exposing the inefficiencies, miscommunications, and outright absurdities of the process. From lost time to pointless bureaucracy, Sean’s experience highlights the challenges disabled individuals face just to maintain their independence. It’s a wild ride that many in the disability community will relate to—if not shake their heads at in disbelief.
But this episode isn’t just about headaches—it’s also about resilience and storytelling. Kyle and Sean sit down with author and father of three, Jay Armstrong, who was diagnosed with cerebellar atrophy later in life. Jay opens up about his journey from grieving his past life to embracing the present, sharing how humor and gratitude shape his perspective. With multiple books under his belt, including Bedtime Stories for the Living, Jay’s insights into self-discovery, perspective shifts, and finding meaning in everyday moments offer a fresh take on what it truly means to adapt. Stick around for a deep, thoughtful conversation filled with honesty, laughs, and a whole lot of wisdom.
Also In This Episode:
- Thank you notes: The Staff at Lincoln Financial Field, and Dan from Manayunk Studios
Links And Resources:
- Jay’s Website where you can find all his books: Write on Fight on
This episode features an interview with Heidi Wallis, Executive Director of the Association for Creatine Deficiencies (ACD). Heidi discusses ACD’s efforts in advancing research, treatments, and newborn screening for creatine deficiency disorders. Heidi shares her personal journey as a mother of two children with creatine deficiencies, emphasizing the importance of early diagnosis and treatment. The conversation also explores the challenges and progress in securing newborn screening for these disorders, underscoring ACD’s mission to improve lives and ultimately find a cure.
Also in this episode:
- Sean explains how the Nu Motion building in Sacramento is an accessibility nightmare.
- Thank you notes: Andra Stratton, and Sean’s friend Hanan.
Links and Resources:
- Association for Creatine Deficiencies (ACD)
- Chan Zuckerburg Initiative (CZI) Rare As One
- Uplifting Athletes
In this episode, we dive into a topic that hits close to home: the tension between hoping for a cure and fully embracing life as it is today. We explore how dreaming about a different future—whether through medical breakthroughs, financial success, or other changes—can be both motivating and, at times, limiting.
Kyle shares a frustrating parking lot experience that sparks a conversation about accessibility, awareness, and the small but constant challenges we face in daily life with a disability. From there, we reflect on how our perspectives have evolved over the years, the importance of finding joy in the present, and how we each work to strike a balance between planning for the future and making the most of today.
Plus, in the spirit of gratitude, we take a moment to recognize some incredible people in our lives who make a difference.
Join us for an honest, thought-provoking, and relatable discussion about perspective, priorities, and the power of focusing on what truly matters.
Also In This Episode:
- Parking Like a Boss
- Thank you notes: Leona Strait and Aunt Libby
This episode features a heartfelt conversation with Rivki, a mother of six, including her youngest son, Eli, who was diagnosed with CTNNB1 syndrome, a rare genetic disorder. She shares her journey of recognizing early developmental concerns, overcoming medical dismissals, and advocating for a proper diagnosis. She discusses the impact of Eli's condition on the family, the challenges and joys of raising a child with a challenging rare disease, and the importance of allowing her other children to express their full range of emotions. As a therapist, she emphasizes inclusivity, the power of curiosity in seeking answers, and breaking societal stigmas around disabilities. Her story is one of resilience, growth, and fostering understanding in the face of adversity.
Also In This Episode:
- Sean's positive TSA experience
- 43 year old small talk
- Thank you notes: Rocky the Rare At Sea travel agent, and a kind Trader Joe's employee
In this episode, Sean and Kyle dive into the evolving nature of independence, especially in the context of disability and life transitions. Kyle shares his journey toward hiring a personal care attendant (PCA) and how his perception of needing help has changed over time. The discussion explores the fine line between dependence and empowerment, emphasizing that asking for help can actually lead to greater freedom, not less. From navigating accessibility challenges at home to managing daily tasks with tools like a backpack or a well-placed handrail, they break down how small adjustments can make a huge impact on self-sufficiency.
The conversation also touches on the emotional complexities of receiving assistance, the language around offering help, and how external perceptions can shape personal identity. Plus, Sean shares a frustrating small business experience, and both hosts reflect on the people who have been game changers in their independence. To wrap things up, they express gratitude to those who have supported them in big and small ways. Tune in for an honest, sometimes humorous, and always thoughtful conversation about redefining independence on your own terms.
Also In This Episode
- The Dudes' factors that affect sleep quality
- Sean files a complaint about a local business
- Thank you notes: Katie Lloyd, Ken Miller
This episode focuses on setting and maintaining goals beyond the traditional New Year's resolutions. The Dudes discuss the importance of checking in on progress, making adjustments, and recommitting to goals even after January.
Kyle
- Hiring a personal care attendant for assistance with daily tasks
- Staying engaged with rideATAXIA fundraising efforts
- Finding an enjoyable and sustainable exercise routine
Sean
- Reducing unnecessary spending
- Limiting Risk time
- Prioritizing quality sleep for overall well-being
Also in this episode:
- Kyle's freezing feet
- Sean's progress climbing stairs
- Thank you notes: The FARA Energy Ball Planning Committee, and Friends Bill & Dee
Season 13 kicks off with us catching up after a well-earned break, sharing our reflections on how time away can spark creativity and renew energy. Sean talks about surprising himself with a change to his daily Starbucks routine, leading to a conversation about the small adjustments we make for a healthier, more balanced life. The dudes reflect on travel challenges and accessibility, from Sean navigating Amtrak trains to Kyle celebrating his parents’ 50th anniversary in Hawaii—complete with a game-changing beach wheelchair experience.
We also introduce our exciting new venture, Rare at Sea, a group cruise for the rare disease community designed to foster connection, adventure, and support. We discuss how cruising offers accessibility and flexibility for people with disabilities while creating opportunities for meaningful interactions that go beyond the science of rare diseases.
Links and Resources
Rare at Sea
In this final episode of 2024, Sean and Kyle reflect on their evolving perceptions of living with Friedreich’s Ataxia (FA) and how their expectations and outlooks have shifted since their diagnoses. They dive into topics like adaptive technologies, changing friendships, and how urgency influences their goals and priorities. Wrapping up with heartfelt thank-you notes, the duo celebrates the impact of community and innovation.
Listeners are invited to embrace reflection, celebrate their progress, and prepare for a new year of possibilities. Email us: thedudes@twodisableddudes.com or comment on Instagram or Facebook.
In this thought-provoking episode, Sean and Kyle discuss what laws they would institute if given ultimate power. They each introduce three laws that would benefit individuals with disabilities and promote greater understanding among all citizens.
These ideas spark a powerful reflection on the need for empathy, inclusivity, and social responsibility.
Listeners are encouraged to join the conversation by sharing their own "laws for a day.”
Also in this episode:
- Sean and Kyle's experience at the FARA/CHOP FA Symposium
- Kyle's new van!
- Thank you to Mark and Chavez
In this candid and deeply personal episode, Sean and Kyle tackle the emotional and mental struggles that come with setbacks—whether from injury, burnout, or life's unexpected challenges. Sean opens up about his difficult recovery journey after a recent injury, where even though surgery wasn't required, the road to getting back on track has been much longer and tougher than expected. With vulnerability and honesty, they explore the ripple effects of physical limitations on emotional well-being, offering insights on how interconnected our mental, emotional, and physical states truly are.
Listeners will appreciate Sean's transparency as he shares the difficulty of regaining momentum after months away from his usual routine, like going to the gym. Together, they discuss practical ways to pull yourself out of a dark place—whether it’s setting small goals, staying accountable to someone, or simply taking those first small steps back toward movement and self-care. They highlight the importance of being kind to yourself during the process and recognizing that it's okay to not have it all figured out. This episode is a reminder that setbacks are a part of life, and the path to healing isn’t about finding a quick fix, but a series of steps that help you move forward.
Whether you’re recovering from an injury, dealing with mental burnout, or just looking for ways to break through a rough patch, Sean and Kyle’s heartfelt conversation is packed with relatable moments and practical advice. Tune in for an inspiring and honest discussion on how to navigate life’s challenges and keep moving forward, even when progress feels slow.
Also in this episode:
- After 10 years, Kyle got a credit card again.
- Thank you notes: Sean - City of West Sacramento and ride share service Via; Kyle - Woman in the TSA line that lifted his bag onto the belt.
In this episode, we recount a challenging experience during our cycling trip in the Himalayas. Sean shares the story of his accident, where he was forced to brake hard on the trike, causing it to flip and throwing him to the ground. The impact left him with severe pain in his shoulder and hip, making it difficult to breathe initially and leaving him unable to continue the ride. Despite his initial hope that he might recover quickly, the pain worsened, and he realized he needed to seek medical attention back in the United States.
With the help of his teammates Colin and Colin's daughter, Alexis, Sean navigated the arduous journey back home, dealing with intense pain throughout. Upon arriving in the U.S., Sean visited the ER to begin his recovery process. Meanwhile, the rest of the team continued the ride, facing grueling climbs and extreme conditions. The episode highlights the resilience and determination of both Sean and the team, underscoring the physical and emotional challenges of undertaking such a demanding journey.
This trip would not have happened without these team sponsors: Biogen, Lexeo Therapeutics, Cure FA Foundation, Masonry Builders, Nugget Markets, and The Avery Family Foundation. Gear provided by: Catrike, Gorewear, and Zeiss Camera Lenses.
The episode ends with a discussion about what's next. Kyle will focus on development of the rideATAXIA fundraising program. Sean will climb the world's longest staircase in Switzerland next year.
This episode kicks off Season 12: An abbreviated season. After eight years of consistent publishing, the Dudes are scaling back for the rest of 2024 in order to fine tune the show, focus energy elsewhere, and just catch up on life. This season will consist of five episodes, one for each month through December. Regular, weekly episodes will resume in February 2025 with Season 13.
The reflection of their trip to India will span over two episodes. In this episode (pt.1), Sean and Kyle reflect on their recent trip to India, describing both the challenges and highlights of their adventure. They mention the initial stress of the journey, the support they received from sponsors and donors, and the excitement and admiration from friends and family.
The episode details their activities, including meeting researchers at the All India Institute for Medical Sciences (AIIMS) and connecting with the FA patient community of India. They recount the logistical difficulties they faced, such as getting their trikes through Customs and navigating airport security with their group, including the language barriers and misunderstandings.
Upon arriving in Leh, they acclimated to the high altitude, explored local culture, and prepared their Catrikes for the upcoming trek. The Dudes share humorous and stressful moments, such as the infamous white scarfs, dealing with intense sun exposure, and adapting to local cuisine.
Finally, they describe the start of their bike ride, marked by a traditional dance and music presentation by local performers, emphasizing the support and encouragement they received throughout their journey.
Be sure to catch episode 257 for the rest of the story.
In the final episode of season 11, The Dudes discuss their major upcoming event: a challenging 200-mile bike ride in the Himalayas - to the top of the world’s highest paved road - over 19,000’. They talk about the logistics, the elevation challenges, and their preparation, including the use of altitude training masks. They also address concerns about food, accessibility, and health, highlighting the need to adapt to unforeseen circumstances.
Sean and Kyle express their excitement and some nervousness about the trip, emphasizing the importance of taking on such challenges despite the risks. The Dudes reflect on the support and inspiration they find within the rare disease community, underscoring the shared goal of pushing boundaries and raising awareness.
Also in this episode:
- An update on Kyle's adaptive van situation featuring a note from Terry in Australia.
- Rare Resilience: Onno Faber
- Thank you notes: The Kindness of strangers and Team FARA supporters
Links and resources:
- More about Sean and Kyle's trip.
- The route map.
- Donate to Team FARA Himalayas.
- Visit our segment partner: #RAREis
This episode (254) features an interview with John Crowley, who shares his journey into the rare disease space. John's involvement started in 1998 when his daughter Megan was diagnosed with Pompe disease, a rare form of muscular dystrophy. Determined to find a cure, John and his family embarked on a journey of research and entrepreneurship, ultimately founding a biotech company that developed a life-saving enzyme therapy for Pompe disease.
Despite initial challenges, including financial struggles and personal sacrifices, John's perseverance led to successful treatments for Megan and other patients. Today, Megan and her brother Patrick are thriving adults, actively contributing to society despite their condition.
John's commitment to patient-centered care extends beyond his personal journey. As CEO of Amicus Therapeutics and now as CEO of BIO, he continues to advocate for rare disease patients, emphasizing the importance of universal access to treatment and addressing barriers to healthcare.
Throughout the interview, John's resilience and optimism shine through, serving as an inspiration for others facing similar challenges. His dedication to making a difference in the lives of patients and his unwavering determination highlight the transformative power of hope and perseverance in the face of adversity.
Also in this episode:
- Sean plans to burn the clothes he wears on the climb up the world's highest road
- Rare Resilience: Kelly Barendt
- Thank you notes: Bio News and the FARA Staff
Links and resources:
- John's previous episode:
- 144 - DD pt2: Do good and...with John Crowley
- BIO
- Make a Wish Foundation
- Visit our segment partner: #RAREis
Rob Long shares his journey with Uplifting Athletes, an organization dedicated to leveraging the influence of athletes to support those impacted by rare diseases. Rob and Brett Brackett took over leadership in 2018, revitalizing the organization's mission. They have several powerful initiatives including The Young Investigator Draft, Lift for Life, Leadership Development, and Uplifting Experiences.
Rob reflects on the organization's impact, sharing a touching story of how a seed grant recipient's research saved his life. This personal connection underscores the profound ripple effect of Uplifting Athletes' work.
Also in this episode:
- Rare Resilience: Jose Flores, Motivational Speaker
- Thank you notes: John the mailman and the Masterclass app
Links and resources:
- Rob's previous episode:
- 070
- Episode with Rob's Rare Resilience segment
- Jose Flores social media:
- Visit our segment partner: #RAREis
In episode 252, Rob Long, executive director of Uplifting Athletes, revisits his rare disease journey. He recounts his college football days at Syracuse University and the abrupt onset of symptoms during his senior year. Rob shares the initial confusion and fear surrounding his diagnosis of a brain tumor, leading to surgery and a challenging recovery process. He reflects on the emotional toll of accepting his diagnosis and navigating through post-traumatic stress disorder (PTSD) in the years following.
Also in this episode:
- Kyle and Sean chat about squishy PB & J
- Rare Resilience: Nathan Peck, CEO of Cure VCP Disease
Links and resources:
- Route map for the Dude's ride in India
- Rob's previous full episode
- Episode with Rob's Rare Resilience segment
- Visit our segment partner: #RAREis
In episode 251 we welcome our dear friend Linda Snyder! Linda shares her personal journey living with a rare genetic type of ataxia and discusses how she discovered the benefits of having a mobility service dog named Cedric. She talks about the rigorous process of applying for a service dog, the extensive training Cedric underwent, and the various tasks he assists her with, including laundry!
Additionally, Linda shares her involvement in the rare disease community, particularly her role in co-founding the Nebraska Ataxia (Now called Ataxia Connection), a support group that has grown significantly over the years. She discusses the impact of connecting with others who share similar experiences and the importance of supporting one another.
Also in this episode:
- Kyle cheats Target out of 15 cents
- Rare Resilience: Rob Long, Executive Director of Uplifting Athletes
- Thank you notes: Starbucks baristas & Pat O'Connel
Links and resources:
- Canine Partners for Life
- Visit our segment partner: #RAREis
Our friends at Jett Foundation invited us into their community once again for a conversation with 5 panelists on Rare Disease Day.
We were honored to moderate the discussion with these friends:
- Race Martinez - Architecture Student, living with Duchenne
- Kris Napper - Graphic Designer/Illustrator, Business Owner, living with SMA
- Chris Schlechty - Software Engineer, Jett Foundation Board of Directors, living with Limb-girdle
- Colin Werth - IT Specialist, International Traveler, living with Duchenne
- Amanda Becker - Mom to individual living with Duchenne
The conversation covered topics such as adaptive driving, college transitions, building a career, volunteering to enrich the community, and entrepreneurship. All of this helped highlight the strength and determination within the rare disease community.
We hope you are as encouraged by this conversation as we are.
Links and Resources:
- Jett Foundation
- Camp Promise
This episode delves into the journey of Skyclarys, the first FDA-approved treatment for Friedreich's ataxia (FA), a rare genetic disorder. The discussion features Dr. Colin Meyer, former executive at Reata Pharmaceuticals, who shares his experiences from the inception of Reata to the acquisition by Biogen.
The conversation offers a compelling narrative of resilience, innovation, and collaboration in the pursuit of groundbreaking therapies for rare diseases. Colin's reflections provide valuable perspectives on the challenges and rewards of drug development, as well as the transformative potential of scientific breakthroughs in improving patient outcomes.
Also in this episode:
- Sean visits Golden 1 Arena
- Newsworthy: Athlete With Cerebral Palsy Finishes The Barcelona Marathon
- Thank you notes: Kyle's friends Blake & Dan and Sean's friend Taylor
Links and resources:
- rideATAXIA Hometown San Luis Obispo, CA. May 11, 2024
- Nic Novicki's 2DD Episode
- Colin's previous episode:
- 035 - Drug Development - LIVE at REATA Pharmaceuticals
- Team FARA Himalayas Fundraising page
- Alex Roca finishing Barcelona Marathon
- Newsworthy music courtesy of Zapsplat.com
In this insightful interview with Jen Farmer, CEO of the Friedreich's Ataxia Research Alliance (FARA), we explore the evolving landscape of rare disease research and the journey towards treatments for Friedreich's ataxia (FA). Jen shares her experiences and challenges as a leader in the field, emphasizing the importance of community involvement and collaboration.
Also in this episode:
- Sean travels to Vegas with a group of 30.
- Newsworthy: Viral ad challenges stereotypes about Down syndrome: ‘Assume I can drink a margarita’
- Thank you notes: Jakob in Austria and Kelly at The Venetian.
Links and resources:
- Jen's Previous episodes:
- DD pt4: Why Sean Baumstark is Banned From Clinical Trials
- How a Mom Launched the First Drug Approval in FA
- Newsworthy music courtesy of Zapsplat.com
In this episode, Sean and Kyle discuss the importance of maintaining discipline and focus, particularly in the face of distractions and competing priorities.
The conversation delves into the concept of knowing what one wants and being clear about goals to stay motivated and driven. They reflect on the significance of surrounding oneself with supportive people who encourage and uplift in the pursuit of those goals.
Also in this episode:
- Kyle exercises a principle he learned in a past 2DD episode
- Newsworthy - International Day for Social Inclusion & Official Release of the Overjoyed Accessible Controller on the Microsoft Store!
- Thank you notes: Kyle's bike mechanic and the Vertiball massager
Links and resources:
- Download the Overjoyed accessible gaming software
- Newsworthy music courtesy of Zapsplat.com
In this episode, we discuss the groundbreaking work of Roll Mobility, a platform revolutionizing accessibility for people with disabilities. Roll Mobility functions as a Yelp-like app, providing users with vital information on the accessibility of restaurants, destinations, and sightseeing locations. By ranking establishments based on their accessibility features, Roll Mobility empowers individuals to plan ahead and ensure a smooth experience without unexpected barriers.
Our guests, and Roll Co-Founders, Rachel Zoller & Joe Foster, delve into the personal connections driving Roll Mobility's mission, highlighting the challenges faced by individuals with disabilities in navigating public spaces. Rachel emphasizes the importance of community-driven data in shaping the app's functionality.
The conversation also delves into the broader societal implications of accessibility, emphasizing the benefits that inclusive design offers everyone. By advocating for accessibility, Roll Mobility aims to foster social awareness and create a more inclusive society.
Listeners are encouraged to support Roll Mobility by downloading the app, sharing it with others, and contributing reviews to help expand its reach. Additionally, if you’re in the Denver area, we encourage you to consider attending an event hosted by Roll Mobility and Dateability, inviting Denver residents to join the Denver Pub Crawl Spring Fling April 27, 2024 to celebrate inclusion and accessibility in their community.
Also in this episode:
- The airline snapped the arm off Kyle's wheelchair
- Newsworthy - Secretary Buttigieg Announces Proposed Rule to Ensure Passengers Who Use Wheelchairs Can Fly with Dignity
- Thank you notes: Michelle and her glass art, and Dawn the personable travel agent from Altour
Links and resources:
- RollMobility Instagram
- Denver Spring Fling Pub Crawl hosted by Roll and Dateability - April 27
- Sign open letter to improve accessibility on Airlines (GlobalGenes)
- Newsworthy music courtesy of Zapsplat.com
The Dudes talk about life changes and the significance of pursuing growth and opportunities, even in the face of uncertainty. Reflecting on personal anecdotes and advice, they underscore the value of acceptance, adaptation, and gratitude in embracing life's journey.
Also in his episode:
- Kyle's most recent challenging experience with airline travel
- Newsworthy - 'Go On, Be Brave' documentary captures perseverance in face of ALS
- Thank you notes: Kyle's driving instructor and Sean's friend in Miami
Links and resources:
- Watch 'Go On, Be Brave' documentary
- The clip Sean mentioned: Making a hard decision? WATCH THIS | Dr. Ellen Langer
- Newsworthy music courtesy of Zapsplat.com
In Episode 244, the Dudes delve into the topic of change and consistency, particularly in the context of living with progressive diseases like Friedreich's ataxia (FA). They discuss the challenges of navigating constant change, setting expectations, and managing the desire for both fast and slow change.
Also in this episode:
- Emergency haircuts and curbcut confusion
- Newsworthy: FOX 5 Las Vegas Surprise Squad
- Thank you notes: A vacation buddy and fake plants
Links and resources:
- Sean's column: The progressive nature of FA taught me to appreciate gradual change
- Newsworthy music courtesy of Zapsplat.com
In this episode, Dr. David Fajgenbaum shares his journey of discovering a drug that saved his own life. He emphasizes the importance of repurposing existing drugs for new uses and highlights the potential of artificial intelligence in identifying such opportunities.
Dr. Fajgenbaum discusses his nonprofit organization, EveryCure, which aims to unlock new uses for existing FDA-approved drugs. The organization utilizes biomedical knowledge and AI algorithms to analyze connections between drugs, genes, proteins, pathways, and diseases. The goal is to find potential treatments for various diseases by evaluating existing drugs.
VIEW THIS INTERVIEW ON YOUTUBE
Also in this episode:
- Sean abandons his principles.
- Newsworthy: Here's what the starbucks of the future looks like. Starbucks has opened its first cafe designed to give customers with disabilities a more accessible store experience.
- Thank you notes: Make a Hole Stranger and Gas Station Jeep Guy
Links and Resources:
- EveryCure
- EveryCure Announces Arpa-H Funding at the White House!
- Castleman Disease Collaborative Network (CDCN)
- Chasing My Cure
- 2DD Ep. 019 - Dr. David Fajgenbaum, Conquering Castleman Disease
- 2DD Ep. 091 - Chasing our Cure with Dr. David Fajgenbaum
- 2DD Ep. 092 - Why Humor is Important with Dr. David Fajgenbaum
- Newsworthy music courtesy of Zapsplat.com
Dave (Dr. Lynch), a seasoned clinician and researcher specializing in Friedreich's ataxia (FA), sheds light on his nearly three-decade journey at the forefront of FA care. Throughout the conversation, Dave emphasizes the indispensable role of patient participation in research, underscoring the collaborative spirit driving advancements in FA drug development.
Also in this episode:
- Sean's Sleep-talking escapades.
- Kyle Finally took his road test for his driver's license.
- Newsworthy: Light Up For Rare comes to a monument near you!
Links and Resources:
- Light Up For Rare
- Newsworthy music courtesy of Zapsplat.com
For Rare Disease Patients, the drug development process can feel huge and overwhelming. It seems like everyone has a role to play; Doctors, researchers, advocacy organizations, pharma industry...we can see how they all fit in the process. What about the patient's role? Listen as The Dudes discuss 4 of the many ways patients can have an impact.
Also in this episode:
- Ever received a mysterious text from an unknown number?
- Kyle talks about receiving a letter regarding his DMV situation and the challenges he faces in navigating bureaucratic systems.
- Newsworthy from Esquire: Four Years After a Crash Left Him Paralyzed, BMX Star Paul Basagoitia Enjoys Riding More Than Ever
- Thank you notes: Sean - A curious coworker. Kyle - Mike and Diane Bryant (Dad and Mom)
Links and Resources:
- Any One of Us documentary trailer
- Paul Basagotia Instagram
- Newsworthy music courtesy of Zapsplat.com
Adapting to changes is a big part of life for everyone. Listen as The Dudes discuss their approach to adapting.
In this episode:
- Kyle uses a voided ID to get past TSA on his way to North Carolina and back.
- Newsworthy from Instagram: Young man paralyzed from the shoulders down after a spinal cord injury in 2020
- The Dudes get into a discussion about adaptation strategies for living with disabilities, emphasizing the importance of planning ahead and being flexible. They also reflect on their upcoming changes to the podcast production schedule, aiming for a more manageable approach.
- Thank you notes:
- Sean: Football season's effect on crowds at the gym.
- Kyle's friend Joy, for planning an awesome game day party
Links and Resources:
- Newsworthy music courtesy of Zapsplat.com
Listener Brian lets the Dudes know that Kyle has in fact been driving illegally for 10 years. Does Kyle have a plan to address this dilema?
In the Season 11 premiere, Kyle and Sean dive into the challenges and triumphs of pursuing dreams, overcoming fears, and embracing new opportunities. The Dudes also discuss the power of setting goals, the fear of failure, and the importance of discipline in achieving success. With inspiring stories and candid reflections, this episode offers listeners a blend of motivation, encouragement, and real-life insights.
Links and resources:
- Benedict Cumberbatch: "Do"
- Aaron Wheelz Instagram
- Newsworthy music courtesy of Zapsplat.com
In episode 238, The Dudes delve into the theme of friendship, highlighting the significance of chosen family and exploring the dynamics of their own unique bond. They draw inspiration from questions curated by MindPath Health, leading to an unscripted and genuine conversation. From childhood influences like movies to bucket list aspirations, The Dudes share personal stories, providing insight into their lives. The episode also touches on life's challenges, frustrations, and coping mechanisms, offering a candid look. In the spirit of National Family Caregivers Month, Sean and Kyle discuss how they prefer to receive care, emphasizing the importance of understanding and genuine support. The episode weaves together laughter, reflection, and wisdom, creating a connection with listeners through shared experiences and open conversation.
The Dudes will be back with new episodes in February. In the meantime, check out past episodes.
Links and Resources
- Mindpath Health - 80 fun questions to ask your friends to get to know them on a deeper level
We are thrilled to have Effie Parks and Daniel DeFabio in this powerful episode! Together, we discuss the pivotal role of the caregiver’s voice in the realm of healthcare, particularly in the context of rare disease. Our dialogue revolves around the essential role of caregivers, whether they are parents, aunts, uncles, or other family members, in advocating for those who may not have the ability to communicate at all, as often seen in the case of children with rare diseases.
Effie & Daniel help us understand why the distinction between patient and caregiver voice is crucial. Caregivers often become the primary advocates for individuals, especially children, who may have limited communication abilities, so caregivers must be included in the entire care process.
Our conversation delves into the challenges faced by caregivers, particularly in the context of rare diseases, where caregiving responsibilities extend beyond traditional roles. Effie & Daniel touch on the complexities of balancing the roles of a parent and a caregiver. They share personal insights into the challenges of finding balance between urgent caregiving needs and the desire to engage in typical parenting activities. Hear us discuss the emotional and mental toll on caregivers and stress the importance of acknowledging both aspects of their identity.
Links and Resources:
- Once Upon a Gene
- The Disorder Channel
- Global Genes
Sean and Kyle engage in a heartfelt conversation with Caley Caroll, a mother, caregiver, and fierce advocate for her son Whitten John and his health challenges. Whitten John was diagnosed with Diabetes Insipidus and Langerhans Cell Histiocytosis, two rare diseases. Caley shares the emotional journey of receiving the diagnoses, the difficulties of caregiving, and the impact on her family. She recounts the challenges of treatments, including chemotherapy, and the importance of gratitude throughout the process. The conversation touches on the effects on her other children and the transformation of relationships within the family. Caley emphasizes the need for intuition and advocacy in navigating the complexities of healthcare. Despite the hardships, there's a sense of gratitude and celebration in the present.
Links & Resources
- Caley's Facebook
- Caley's YouTube
- Caley's Twitter/X
- Caley's Instagram
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Zach Wichter joins us to discuss the massive, yet not-so-commonly known incidents of damage to mobility devices caused by airlines. Zach is a consumer travel reporter for USA Today and focuses much of his writing on air travel specifically. Zach discusses his project where he has been tracking incidents of airlines damaging mobility devices throughout 2023, working to put names and faces, through storytelling, to the 10,000-15,000 devices that airlines damage each year. He highlights the significant impact of such damage on disabled travelers and their families, emphasizing the human aspect behind the statistics. We discuss potential solutions, efforts of improvement being made, and of course, the ongoing need for advocating in order to keep the ball rolling towards improvement.
Zach’s dedication to sharing these stories and raising awareness for this issue is evident throughout the episode and he encourages listeners to share their stories and contribute to the ongoing dialogue about accessibility in air travel.
Links & Resources
- Read one of Zach's stories and submit your own: Flyer 'just in shock' after watching wheelchair fall off baggage belt from a United flight
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
The Dudes recently had the privilege to host a virtual panel for Jett Foundation's celebration of World Duchenne Awareness Day 2023. This panel includes Patients, Caregivers, and Medical Professionals. Some of the topics discussed include:
- Understanding Manifesting Carriers
- Common Misconceptions About Female Carriers
- Challenges of Transitioning from Pediatric to Adult Care
- Geographic Challenges and Access to Care
- The Role of Virtual Visits
- Tips for Navigating Healthcare Challenges
We are continuously impressed with the DMD Community's drive to help each other navigate challenging situations. Thank you, Jett Foundation, for allowing us to be part of this conversation.
Links & Resources
- Find out More: Jett Foundation
In this episode, Kyle and Sean discuss various incidents that prompt them to contemplate the responsibilities and expectations within the disabled community. The dudes discuss whether people with disabilities sometimes misuse their rights or privileges, particularly in situations like pre-boarding on flights. They explore that every right implies a responsibility and how some actions might reflect poorly on the entire community.
Links & Resources
- Sean's Article: Living With A Disability Heightens My Sense Of Responsibility
- Register Today: Friedreich's ataxia News Virtual Event, Nov 1
- Check it out: Aquila Fitness
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Episode 232 welcomes Matt LaFleur who shares his journey as a rare disease patient with Friedreich's ataxia (FA). Matt talks about how he transitioned from viewing himself as a victim of FA to seeing himself as a hero in his own story. He describes the impact of the diagnosis as an "inciting event" and highlights how the hero's journey is not just a linear path but a cyclical one. Matt emphasizes the importance of taking responsibility and finding little victories along the way, despite the ongoing presence of FA. The discussion touches on various aspects of life with a rare disease, relationships, and personal growth. Matt also shares his experience of presenting at the FA Symposium and how he and his co-presenters used mythical characters to relate their topics to the hero's journey concept. The episode offers a unique perspective on finding inspiration and resilience in the face of adversity.
Links & Resources
- Register Today: Friedreich's ataxia News Virtual Event, Nov 1
- Read: Matt's Column
- Watch: FARA FA Symposium Recordings
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
In this conversation, Sean and Kyle discuss the concept of advocacy and its various forms. They reflect on their experiences with advocacy, from meeting with legislators for rare disease-related issues to everyday interactions. They emphasize the importance of not staying silent and making one's voice heard, whether it's through legislative meetings, social media, or personal interactions. They also acknowledge the power of raising awareness and challenging perceptions of disability by expressing yourself in whatever way you choose.
Links & Resources
- Register Today: Friedreich's ataxia News Virtual Event, Nov 1
- Watch: Joe Sooch's YouTube Channel
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
In this interview, podcast hosts Bill Nowicki and Laura Graham discuss their podcast, "Navigating Mental Illness: Parent Stories."
They talk about their personal journeys and experiences with mental illness in their families, emphasizing the importance of storytelling and providing a platform for parents to share their stories. The podcast aims to offer support, resources, and hope to parents who are dealing with the challenges of mental illness in their children. Bill and Laura also highlight the power of vulnerability and listening in building connections and healing.
They encourage listeners to reach out and share their own stories on their podcast. You can find their podcast on various platforms and connect with them on their website below.
Links & Resources
- Bill & Laura's podcast and website
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Keeping an exercise routine is difficult for everyone. Add a rare disease in the mix and there are even more difficulties. The Dudes talk about their motivations, and the difference between motivation and discipline.
Also:
- Hear Sean's most recent travel story about his lost walker on Southwest Airlines. This story was recently featured in USA Today.
- Quote of the week: "Discipline is choosing between what you want now and what you want most." - Abraham Lincoln
Links and Resources:
- Sean's Travel Story in USA Today
- Stella Young's TED Talk
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Advancement is about learning and implementing new ideas and techniques. In August, The Dudes attended the Podcast Movement conference in Denver, CO. They learned a lot about the podcast industry and how to improve the show - and a few things that apply to their everyday mindset.
Links and Resources:
- Podcast Movement
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Despite being visually impaired, Dave Wilkinson has accomplished remarkable feats, including marathons and Ironman competitions. His next ambitious goal: the Race Across America, a 3,000-mile non-stop bike race. Dave shares his journey, emphasizing the importance of trust between guide and athlete, and how he overcomes challenges. His story is a testament to pushing boundaries and embracing life's adventures, even when tinged with danger. Tune in for a powerful and motivational conversation that reminds us that anything is possible with the right mindset and determination.
Links and Resources:
- Learn more and support Team Speedy Turtle
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Join the dudes as they dive into a candid conversation about the complexities of commitment, relationships, and disability. They explore how disability can introduce uncertainty and self-doubt into one's pursuit of a long-term partnership. Discover valuable insights and reflections on the role of societal norms, personal growth, and human nature in shaping our desires for companionship. Tune in to gain a deeper understanding of the challenges and nuances surrounding commitment.
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Dr. Tyler Sexton is the Medical Director of pediatrics at Singing River Health System in Mississippi. He's also an international motivational speaker and author, and he has cerebral palsy.
Dr. Sexton discusses his journey and how his disability motivated him to become a pediatrician. He shares his early struggles, as he was born prematurely and given a grim prognosis, but he defied the odds through 18 surgeries, months of hospital care, and determination.
As a doctor with a disability, Dr. Sexton talks about how he can uniquely relate to his patients, offering them understanding and compassion that able-bodied doctors may not provide. He mentions that while some patients have initially hesitated to be treated by him because of his disability, he has been able to win them over with his expertise and care.
Dr. Sexton's parents encouraged him to dream big and not let his disability define him. He also advocates for radical authenticity and resilience, reminding everyone that we all face challenges and can choose to live in excellence.
Links and Resources:
- Dr. Sexton's Website
- Dr. Sexton's Book: God Bless These Little Legs
- Dr. Sexton's Book: No Such Thing as Can't
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
To kick off the inaugural Film Festival at the BIO International Conference, we had the opportunity to moderate a panel about using podcasts, video, and other media to help center the patient voice in the drug development process.
This panel featured three top advocates who regularly use media to amplify the patient voice:
- Daniel DeFabio, Co-Founder, The DISORDER Channel
- Michelle Rivas, Senior Manager, Communications, Horizon Therapeutics
- Eve Dryer, Vice president, Patient Advocacy, Travere Therapeutics
We learned a lot from these fellow advocates and we hope you do too!
A few years ago, Kyle and Sean both had experiences with someone else judging them for their disability. Whether it was fair or not, both dudes took offense to the way they were approached. Today they review those situations and reevaluate their reactions. Would they react differently today? Listen to find out.
Links and resources:
2DD Episode 114 - Don't Judge A Dude By His Wheelchair
rideATAXIA Philadelphia - Sunday, October 8
Ever have those moments where you reflect on the past and think to yourself, “Well, 20 years ago…” and immediately realize that the memory you’re recalling was actually 30 years ago? In other words, time flies and we’re all getting old.
In this episode, The Dudes discuss pros and cons of how the world has changed over their lifetime, especially highlighting the global connectedness that the internet, smart phones, and social media has allowed. Perhaps such ability to connect with others has been the most significant game changer for the rare disease community in the last 20 (or 30) years?
Links and resources:
- Sean's column - How improved global connectedness benefits the rare disease community
Season 10 kicks off with ep221. Life is constantly changing, especially when living with progressive rare disease. Both Kyle & Sean are living with Friedreich’s ataxia and their abilities are changing often. Recently, Sean hit a mini-golf course and although it wasn’t what he remembers as a teenager, he still found ways to have fun. Ep221 reminds us that “fun” is what you make of it and how you define it.
Links and Resources:
- Sean's Column - Living with Friedreich's ataxia doesn't mean I can't have fun
For the last episode in Season 9, we want you to know how much we appreciate you listening to this show. This season has been especially trying as we unknowingly doubled our workload at the beginning of the season. Listen as the dudes explain. The conversation goes existentially deep as usual. Enjoy. Thank you for listening.
In this Episode:
- In a previous episode, the dudes talked about a hotel bed that was too high. Sean just got a new bed and you might be able to guess what he thinks of it...
- You Got This, Mental Health featuring Dr. Al Freedman - We've had him on Multiple times because he's doing great work. Dr. Al's sweetspot is the intersection between Rare Disease and Mental Health because of his son Jack who lived with SMA for 26 years. Dr. Al joins us to talk about the fact that Rare Disease may not be the only source of challenge in someone's life.
- The Dudes are both wired for productivity so staying busy is a big part of life. But when is it too much? Where's the line? How does this line play into our vision and goals?
- Thank you notes - Ted Lasso, and Sean's Landlords.
Links and Resources:
- Dr. Al's new website - RareCounseling.com
- Sean's Article: Simple Questions Help Me Keep Life With FA in Perspective
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Physical Therapy is an important part of care for many people in the rare disease and disability communities, However, it's difficult to find a phhysical therapist who will work to understand your disease. That's why we enjoyed talking with Dr Gretchen Hawley. See how she's different and how you might be able to put some of her principles into practice.
In this Episode:
- Kyle talks about Team FARA's participation in Bike New York's Five Boro Bike Tour along with 30,000 other people.
- You Got This, Mental Health featuring Shelley Bowen - Shelley joins us again to talk about the value of a good therapist when facing life's challenges.
- Dr. Gretchen teaches us that listening and understanding are important aspects of a good physical therapist.
- Thank you notes - Team FARA Teammates and new friends Chris, Tierra, Chris, Kahlua & Kai
Links and Resources:
- Dr Gretchen
- YouTube
- The MSing Link Wellness Program
- The MSing Link Podcast
- Book Info
- Barth Syndrome Foundation
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
There are lots of things that may be accessible for one person but not another. Some are inconvenient, and some are impossible.
From topics in other episodes to recently traveling together, we noticed a handful of things that make sense, and things that don’t make sense. Listen for experiences, both good and ridiculous, as we discuss the challenges of accessibility.
In this Episode:
- Sean tells us the latest in his dealingsx with StorQuest. Spoiler: It's not good.
- You Got This, Mental Health - Sean and Kyle share similar stories of their wheelchairs rolling away from them. We all struggle. Sharing with others can help lighten the load.
- The Dudes talk about a recent experience at a hotel. It helps expose some issues about accessibility.
- Thank you notes - An aquaintance at a laundromat, and Neighbor Melanie (the best!)
Links and Resources:
- Episode 193 - Accessibility Matters: Air Travel is Not Exempt - with Mary Caruso
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
For college students, sports games are a huge part of the college experience. However, students with disabilities are often left out due to poor accessibility. In episode 217 you'll hear from Noah Griffith, a journalism major who wrote a letter about his experience accessing the student section at a basketball game. Noah used his voice to make a difference.
In this Episode:
- The Dudes discuss how planning and execution are two different things when it comes to Airlines.
- You Got This, Mental Health featuring James Miller - You might remember James from Episode 068. James is a Psychotherapist and joins us to talk about the people we choose tto spend our emotional energy on.
- The Dudes talk to Noah Griffith about the difference he is making at Auburn University due to his disability.
- Thank you notes - A Chili's Host, and Airport Bathroom Guy
Links and Resources:
- James Miller's Book - Life Lessons: You Are The Expert On Your Life | A Workbook
- Noah's Letter to the President of Auburn University
- Auburn for all: Noah Griffith adevocates for accessible athletics experiences
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Research studies are designed to investigate the details of our bodies and lives. The research process has the potential to point out how our disability limits us. This can be tough to take. That’s why it’s important to recognize the emotional response to research.
In this Episode:
- Kyle left the house to get pants.
- You Got This, Mental Health featuring Heidi Behr - You might remember our friend Heidi from Episode 182 - Comparing Ted Lasso To Reality. Heidi returns to talk about JOY and how we find our way there.
- The Dudes discuss the emotional response to the use of assistive technology. Emotions can get heavy when we think about the need for these things.
- Thank you notes - Kyle's Socks and Friends that help move stuff
Links and Resources:
- Branding Science
- Heidi Behr, LCSW, MSW, MPH
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
This is the first episode ever that does not feature both Dudes! Sean is joined by our friend and guest host, Effie Parks from the Once Upon A Gene Podcast. Effie produces short “Effisodes” on her show and one in particular grabbed Sean’s attention. With Kyle on the road, Effie agreed to help The Dudes with this episode and takes Kyle's place, in addition to allowing us to share one of her Effisodes.
In this Episode:
- How Effie got into podcasting.
- You Got This, Mental Health featuring Shelley Bowen - Grief is a process. Everyone grieves differently. It's ok to figure it out as you go. Listen to hear Shelley's wisdom.
- In an Effisode, Effie talks about a touching experience at a recent Birthday Party.
- Thank you notes - Rodney Samaco, Ph.D., PT with Dri
Links and Resources:
- Barth Syndrome Foundation
This episode brought to you in part by Reata Pharmaceuticals.
Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com
©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
According to an article Kyle read on Forbes.com, "Inspiration Porn provides kind of superficial pleasure and gratification for the viewer, while objectifying , often harming the mostly passive subjects being looked at.” Sounds pretty bad. Find out what the Dudes think.
In this Episode:
- Kyle gets Door Dash delivered to the wrong address...again.
- You Got This, Mental Health featuring Kate Walker - Many of us ask ourselves "why me?" when thinking about our rare disease. Kate helps us explore why we should brake that habit.
- The Dudes discuss how they might be perpetuating the idea of Inspiration Porn by benefiting from the attention that comes from having a disability.
- Thank you notes - A grocery store-apple-helper and a Chipotle cashier.
Links and Resources:
- Matthew LaFler's Article: The importance of resilience and other lessons from my diagnosis
- Stella Young's TEDx Talk: I'm not your inspiration thank you very much
- How to Avoid "Inspiration Porn" by Andrew Pulrang for Forbes.com
As Sean says: Government is HARD - especially when trying to navigate the Social Security Disability system. That’s why we talk to Spencer Bishins who worked in the Social Security Administration for years and shares his insights with us. Spencer just scratches the surface with us- but you can find all the details in his book: Social Security Disability Revealed - Why it’s so hard to access benefits and what you can do about it.
In this Episode:
- Sean explains how StorQuest made it so easy for him to never do business with them again.
- You Got This, Mental Health featuring Lara Bloom - There are many challenges living with a disability. On top of the physical challenges, people with invisible disabilities often have a hard time getting strangers or even doctors to believe them - Lara shares her perspective and how the Ehler's Danlos Society is addressing the issue.
- Spencer Bishins gives us some insight into why it's so hard to access Social Security Disability Benefits.
- Thank you notes - Two nice people.
Links and Resources:
- Bishins Publishing
- Ehlers-Danlos Society
Maneuvering a wheelchair presents many situations that are much different than a person who uses their legs to get around. When you offer to help someone in a wheelchair, here are a few things you should keep in mind.
In this Episode:
- Kyle checks out a new section of bike trail so Sean wants to make sure he does it safely.
- You Got This, Mental Health featuring Kate Walker - Depression is common for people living with Rare Disease - Kate shares a bit of her experience dealing with depression.
- Sean brings his "Top Ten" list of annoyances while traveling in a wheelchair - constructive feedback for those who want to help.
- Thank you notes - The people who make bike trails happen, and Sean's editors at Friedreich's Ataxia News
Links and Resources:
- Depression and anxiety in patients with different rare chronic diseases: A cross-sectional study
Anxiety is a common experience for anyone living with Rare Disease. The more we talk about it, the more we loosen the grip it has on our lives.
For Rare Disease Day 2023, we were honored to moderate a virtual panel with our friends at Jett Foundation. The theme was Thriving with Duchenne; a Rare Disease Day event focused on mental health and anxiety and it features a diverse panel of patients, caregivers, a life coach, and a Psycologist.
Duchenne Muscular Dystrophy (DMD) affects mostly males and causes progressive muscle damage in the entire body. It is the most common fatal pediatric disorder.
Duchenne has no cure. But the individuals in this episode are determined to Thrive with Duchenne.
Links and resources:
- Unedited Video Recording Of The Session
- For Rare Disease Day 2023, we were honored to moderate a virtual panel with our friends at Jett Foundation. The theme was Thriving with Duchenne; a Rare Disease Day event focused on mental health and anxiety and it features a diverse panel of patients, caregivers, a life coach, and a Psychologist.
- Duchenne Muscular Dystrophy (DMD) affects mostly males and causes progressive muscle damage in the entire body. It is the most common fatal pediatric disorder.
- Duchenne has no cure. But the individuals in this episode are determined to Thrive with Duchenne.
In this Episode:
- You Got This, Mental Health - Our friend Shelley Bowen (Ep 140) takes us through her experience having the hard talk about death.
- The Dudes are quite uncomfortable talking about SEX, especially sex and disability. So we welcome Jennie Williams from Enhance the UK to introduce the topic.
- Thank you notes - Kyle's Condo Community - Old Forge Crossing, and a backwards thank you for StorQuest.
This episode happens to contain two topics that we’ve never addressed in depth. This is because we never had the words or the right people to guide us. Our feature conversation is with @enhancetheuk Founder & CEO, Jennie Williams who leads us on a deep dive into the world of sex and how it matters amongst disabled and nondisabled persons. Shelley Bowen also joins us again for a short chat on preparing for the tough conversation of advanced directives. Ep210 is fully packed, buckle up!
Links and Resources:
- Undressing Disability
- Barth Syndrome Foundation
In this Episode:
- You Got This, Mental Health - Feeling seen and heard. Some of the responsibilty is on you.
- Can a single person make a difference? The amazing story of the first approved drug for Friedreich's ataxia (FA)
- Thank you notes - Reata Pharmmaceuticals, and Kyle's landlord at work.
As the story goes, in an effort to do whatever she could for her son who lives with Friedreich's ataxia (FA), a concerned mother connected a few important dots about science and the pharmaceutical industry. When she decided to make a phone call to the Friedreich's Ataxia Resxearch Alliance (FARA), she started a series of actions and events that eventuallu led to the approval of the first treatment for FA, SKYCLARYS. Listen for the details.
Links and Resources:
- Announcement: First Medication to Treat Friedreich's Ataxia Approved on Rare Disease Day!
In this Episode:
- The very first treatment for Friedreich's ataxia (FA) was approved last Tuesday! A deep dive into this next week.
- You Got This, Mental Health -
- There's not one "right" direction in life. Keep moving forward and making progress.
- Thank you notes - Clinical Team at Children's Hospital of Philadelphia and Sean's Personal Barista
It’s easy to second guess our choices and doubt our decisions. Although there may be more efficient steps to take or faster directions to follow to get to our destination, is there ever a wrong way? Hear The Dudes share their experiences and perspectives.
Links and Resources:
- Sean's Column: Moving in a Positive Direction | Living With FA Reinforces My Commitment to Making Progress
In this Episode:
- How Kyle ended up at Cracker Barrell for chicken fried steak at lunchtime
- You Got This, Mental Health featuring Andra Stratton - Managing expectations for drug development
- Asking for help is complicated. The Dudes talk through some of the different scenarios that make it so.
- Thank you notes - Gail Moore
We all need help sometimes. However asking for, and receiving help are not straight forward. Sometimes our pride gets in the way of other people trying to offer help.
Links and Resources:
- Asking for help is so damn hard. Here's how to make it easier
This episode brought to you in part by Horizon Therapeutics.
In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant
In this Episode:
- Dr. Kyle gives his advice.
- You Got This, Mental Health - Self Image
- Audrey Greenberg is the CBO of Discovery Labs and the Center for Breakthrough Medicines. She talks with The Dudes about how authenticity can benefit all of us.
- Thank you notes - Bill at Meineke & Taylor Wohler
When you come as you are, others feel free to bring their authentic selves to the conversation. This is one of the many things we took away from our conversation with Audrey Greenberg, CBO of the Center for Breakthrough Medicines. Greenberg manages the 1.6 million-square-foot campus at the Discovery Labs King of Prussia, PA one of the largest facilities for life sciences and technology in the world.
Links and Resources:
- Mental Health - Self Image
This episode brought to you in part by Horizon Therapeutics.
In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant
In this Episode:
- Almost a year later, Kyle gives an update on his wheelchair drama.
- You Got This, Mental Health featuring Andra Stratton - Managing our expectations for Drug Development.
- The Dateability App - Designed by someone with a disability for the disabled community.
- Thank you notes - Dr. Anna Stepanova & Aaron Fisher
After learning of her own disability and chronic illness, Jacqueline was exposed to a persistent ableist mentality and she wasn’t a fan. This showed up a lot in her dating life and she couldn’t find a dating app that she felt safe using and that helped her meet people that understood disability. So, she teamed up with her sister and they launched The Dateability App.
Links and Resources:
- Mental Health
- Uplifting Athletes
This episode brought to you in part by Horizon Therapeutics.
In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant
Welcome to Season 9!
Dolly Parton wants to see more kindness in 2023. However if you ask Sean, kindness is not the issue - it's awareness of others around you. It will make sense after you listen.
Sean's column on the subject: No Good Excuse
This episode brought to you in part by Horizon Therapeutics.
In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant
There's a common debate going on in many of our heads when it comes to committments. Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it. If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse? Ultimately that's for you to decide for yourself...
Resources mentioned in this episode:
- Intro post for Sean's column: No Good Excuse
- 2DD episode 178 - Man Turning Into Stone - Joe Sooch
This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.
The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts
Making the transition to independence is difficult to begin with. It is further complicated if you have a rare disease. Lauren Riggs joins The Dudes to talk about her recent experience moving away from home to go to school at University of Oklahoma and then grad school in Texas. Lauren lives with Friedreich's ataxia (FA). Her own journey with accessibility leads her to facilitate accessibility for others.
During this episode, Lauren explains the Spoon Theory which many people living with rare or chronic disease can relate to.
This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.
The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts
When Katie Lloyd's son was diagnosed with a rare, lifethreatning disease, she began to notice that people around her reacting to the news in some unintentionallyinsensitive ways.
When we witness someone going through a difficult situation, our first impulse is to say something encouraging: "Chin up!" "The Sun will come out tomorrow". However, responses such as this can be counterproductive because they lack empathy and understanding. Instead, perhaps we should simply acknowledge the difficulty and "hold space for each other."
The Dudes agree that this is a topic that we can all learn from.
Katie's blog: https://averyrareadventure.com/
This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.
The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts
When Katie Lloyd's son was diagnosed with a rare, lifethreatning disease, she began to notice that people around her reacting to the news in some unintentionallyinsensitive ways.
When we witness someone going through a difficult situation, our first impulse is to say something encouraging: "Chin up!" "The Sun will come out tomorrow". However, responses such as this can be counterproductive because they lack empathy and understanding. Instead, perhaps we should simply acknowledge the difficulty and "hold space for each other."
The Dudes agree that this is a topic that we can all learn from.
Katie's blog: https://averyrareadventure.com/
This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.
The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts
We have been doing this for 6 years - we're still friends, and we hope a few people have enjoyed listening. Let's celebrate episode 200 with a little reminiscing, a few old snippets, and a brief look at the future of the show.
Some of our favorite epispdes that we mentioned:
- 055 - Facing the Realities of Physical Changes
- 073 - Jeff Bell Part 1 - What is OCD?
- Jeff's cause: The A2A Alliance | Adversity to Advocacy
- 083 - Reasons to Push Our Limits
- 166 - Ultra Rare Drugs at no Cost to The Patient - Stan Crooke
- Stan's cause: n-lorem FOUNDATION
- 181 - Every Person Matters with Tom Hamilton
This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.
The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts
We have been doing this for 6 years - we're still friends, and we hope a few people have enjoyed listening. Let's celebrate episode 200 with a little reminiscing, a few old snippets, and a brief look at the future of the show.
Some of our favorite epispdes that we mentioned:
- 055 - Facing the Realities of Physical Changes
- 073 - Jeff Bell Part 1 - What is OCD?
- Jeff's cause: The A2A Alliance | Adversity to Advocacy
- 083 - Reasons to Push Our Limits
- 166 - Ultra Rare Drugs at no Cost to The Patient - Stan Crooke
- Stan's cause: n-lorem FOUNDATION
- 181 - Every Person Matters with Tom Hamilton
This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.
The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts
A guiding principle Sean has adopted from his employer applies to every area of life - Respect, Appreciate, and Value Everyone, a.k.a RAVE.
As a Fortune 100 Best Companies to Work For, Nugget Markets, Inc. is careful with the culture they foster and honor. In this episode, Sean shares a glimpse into this particular core value that is worth everyone’s consideration.
A couple of mentions in Episode 199:
- Episode 040 with Arash Bayatmakou
- CanDo’s Keto Krisp. Listen to ep198 for a discount code from the Founder - Adam Bremen.
Adam Bremen is the co-founder of CanDo, the maker of the #1 Keto bar on Amazon, Keto Krisp. Despite living with Cerebral Palsy and having experienced much hardship and loss in his life, Adam is one of the most positive and genuine people we've ever had on the show. The success of his brand is not surprising given his outlook on life and his support for others.
We've tried Keto Krisp and we're fans. You can try the delicious bars too, by visiting tastecando.com and entering ADAMCANDO at checkout for your discount.
Adam credits his friend Jesse Billauer for inspiring him to get in shape. Check out Jesse's adaptive surfing and other events at liferollson.org.
Rare Disease is ever present and relentless. Sometimes we wish we could push the pause button and live an able bodied life for a little while.
Kendall harvey writes about this struggle in her recent column for Friedreich's Ataxia News. The article is called FA Progression No Longer Has Total Contr Olver My Life and she talks about it with The Dudes.
Follow Kendall on Instagram as she chases her 9th fundraising title for rideATAXIA Dallas.
Sean is overwhelmed at the moment. He has too much on his plate and life is chaotic. Kyle's plate is pretty full too. However there's always something to talk about.
Listen as the dudes talk about being over subscribed and possible strategies to avoid this situation.
The biggest obstacle to treating patients with overlooked diseases isn’t finding potential treatments — it’s funding them.
Alok Tayi
Join the Dudes as they get a glimpse into the world of Cryptocurrency and discover how patient communities can have more control of research direction as they chat with Vibe Bio CEO, Alok Tayi.
The biggest obstacle to treating patients with overlooked diseases isn’t finding potential treatments — it’s funding them.
Alok Tayi
Join the Dudes as they get a glimpse into the world of Cryptocurrency and discover how patient communities can have more control of research direction as they chat with Vibe Bio CEO, Alok Tayi.
Sean loves to play the game Risk online with people he doesn't know. When someone attacks him, rather than focusing on trying to win the game, his strategy is sidetracked by the need to destroy this person who injured him. Until one day he realized it was better to just play the game and not take attacks personally. This concept relates to many situations for The Dudes. Listen and enjoy this deep conversation :-)
This episode was brought to you in part by Horizon Therapeutics.
In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.
Sean loves to play the game Risk online with people he doesn't know. When someone attacks him, rather than focusing on trying to win the game, his strategy is sidetracked by the need to destroy this person who injured him. Until one day he realized it was better to just play the game and not take attacks personally. This concept relates to many situations for The Dudes. Listen and enjoy this deep conversation :-)
This episode was brought to you in part by Horizon Therapeutics.
In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.
Kyle's Wheelchair was damaged on an American Airlines flight in April. It is now September and it is just now getting resolved.
While working his way through the situation, Kyle phoned a friend, Mary Caruso who provided advice and encouragement about the process and how to conduct oneself while advocating for what you need. Ultimately Mary's advice lead to a reimbursement check from the airline.
You gotta know your rights and you gotta believe that you are just as important as the person next to you. Take it from Mary.
This episode was brought to you in part by Horizon Therapeutics.
In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.
Kyle's Wheelchair was damaged on an American Airlines flight in April. It is now September and it is just now getting resolved.
While working his way through the situation, Kyle phoned a friend, Mary Caruso who provided advice and encouragement about the process and how to conduct oneself while advocating for what you need. Ultimately Mary's advice lead to a reimbursement check from the airline.
You gotta know your rights and you gotta believe that you are just as important as the person next to you. Take it from Mary.
This episode was brought to you in part by Horizon Therapeutics.
In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.
In this week's round of Guess What, both dudes came out winners. Kyle won because Sean gave it away. Sean won on a technicality.
Then, Kyle introduced a topic based on his recent cycling adventure: We are constantly faced with decisions that affect the outcome of our lives. Our response to these decisions is often determined by the priorities we set for ourselves either consciously or unconsciously.
Through their discussion, the Dudes challenge each other to be intentional about setting priorities to help make decisions that serve those priorities.
In thank you notes, Sean thanks Canva for their support of Non Profits. Kyle thanks Chris Farley for all the laughs.
Enjoy!
This episode is brought to you in part by Horizon Therapeutics.
In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.
In this week's round of Guess What, both dudes came out winners. Kyle won because Sean gave it away. Sean won on a technicality.
Then, Kyle introduced a topic based on his recent cycling adventure: We are constantly faced with decisions that affect the outcome of our lives. Our response to these decisions is often determined by the priorities we set for ourselves either consciously or unconsciously.
Through their discussion, the Dudes challenge each other to be intentional about setting priorities to help make decisions that serve those priorities.
In thank you notes, Sean thanks Canva for their support of Non Profits. Kyle thanks Chris Farley for all the laughs.
Enjoy!
This episode is brought to you in part by Horizon Therapeutics.
In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.
Tracy Dixon Salazar is a mother, scientist, and Executive Director of the Lennox-Gasteau Syndrome Foundation.
"I don't think we should be writing off Rare disease Patients and assigning them death sentences anymore. I think we should be rolling up our sleeves and doing a covid like movement to actually start saving some people's brains"
Tracy Dixon-Salazar
Lennox-Gastaut Syndrome (LGS) is a severe epilepsy syndrome that develops in young children and often leads to lifelong disability.
The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awarenesss, and family support.
Advertisement:
In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.
Tracy Dixon Salazar is a mother, scientist, and Executive Director of the Lennox-Gasteau Syndrome Foundation.
"I don't think we should be writing off Rare disease Patients and assigning them death sentences anymore. I think we should be rolling up our sleeves and doing a covid like movement to actually start saving some people's brains"
Tracy Dixon-Salazar
Lennox-Gastaut Syndrome (LGS) is a severe epilepsy syndrome that develops in young children and often leads to lifelong disability.
The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awarenesss, and family support.
Advertisement:
In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.
There are so many things in life that are out of our control but our reaction to them always is.
There are so many things in life that are out of our control but our reaction to them always is.
At the beginning of June we were invited to moderate a panel at the Chan Zuckerberg Initiative Rare as One Annual Meeting in San Diego, CA.
Most of the time diagnosis of a rare disease comes out of the blue and includes life altering, and life shortening symptoms. The effect of which leave familiy members and friends to manage care and figure out how they might solve the problem. Many times this means starting a nonprotit organization to advance science toward a treatment and cure. Patients, parents and friends run these organizations with little to no budget or training. These heroic efforts make slow progress while testing the resolve of their leaders who are constantly operating at the edge of their emotional, and physical capacity.
The CZI Rare as One Program provides funding and training to build or expand research networks as well as increase organizational infrastructure to support this important work.
The program started in 2019 and this was the first in person meeting of the 50 grantee organizations that make up the Rare as One Network. It was an emotional time as the grantees continued to learn and laugh together in 3D instead of through a screen.
We had the opportunity to moderate the closing session to talk about the incredible progress to date and the future of the program with three leaders of Rare as One,
- Vice President, Science in Society at CZI, Tania Simoncelli
- Rare as One Program Manager, Heidi Bjornson-Pennell
- Rare as One Program Associate, Andra Stratton
Enjoy the conversation.
Is Kyle's dad trying to kill him?
A new season, a new segment: Guess What?
Plus:
Living with a disability can be isolating. Especially among able bodied friends. However like most things in life it's about how we react. Whether that's communication about the situation or being proactive and finding more accessible activities, our reaction will determine our experience and the ecperience of the group.
Sound from zapsplat.com.
Is Kyle's dad trying to kill him?
A new season, a new segment: Guess What?
Plus:
Living with a disability can be isolating. Especially among able bodied friends. However like most things in life it's about how we react. Whether that's communication about the situation or being proactive and finding more accessible activities, our reaction will determine our experience and the ecperience of the group.
Sound from zapsplat.com.
Kyle just finished a crazy cycling adventure in the backwoods of Montana and Idaho. 12 days in, Kyle called Sean with some insights from the journey which we can all apply to our lives every day. Sean's analysis may hit home with you.
The Dudes take 8 weeks off from publishing episodes between seasons. However, they stay pretty busy with their day jobs, extracurricular activities, and even this podcast. With the start of Season 8, this episode features a conversation between Kyle & Sean catching up on the busy summer they've had.
The Dudes mention a few things they'd love for you to check out:
For rideATAXIA events and impact, visit www.rideataxia.org
For team de:terminence, visit www.determinence.com
To follow Kyle's blog and GPS of his current adventure, "Ride Wild," visit: www.KyleABryant.com
Update on Google's speech recognition app for people with speech impairments.
Plus, a discussion about how acknowledgement of the progression of disease affects planning in life. Once again, talking about the tough stuff may help us along in our journey with any health challenge.
Living beyond circumstancemeand finding ways to thrive with whatever hand you're dealt. In this episode we hear from 4 young men who are thriving in their lives with Duchenne Muscular Dystrophy.
Jett Foundation put together this panel as their community joined in the recognition of Rare Disease Day on the last day in February.
The mission at Jett Foundation is to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders.
Jett Foundation partners with individuals and families through empowering educational programming, transformational direct service experiences, and by accelerating the development of life-changing treatments.
James Mackay, PhD, Founder, President and Chief Executive Officer of Aristea Therapeutics, has over 25 years of development and commercialization expertise in the pharmaceutical industry, including 6 drug product approvals across multiple therapeutic areas. James joins The Dudes to discuss his experience and how he is contributing to and benefiting from the biotech leadership community.
Ted Lasso is a popular show on Apple TV about an american football coach who gets recruited to a pro soccer team in London. One of the show's strongest themes is mental health and how it affects everything we do. Heidi Behr is a Licensed Clinical Social Worker (LCSW) and she joins us to talk about how Ted Lasso Portrays mental health and therapy.
Tom Hamilton is a changemaker in the FA and Rare Disease Communities. He works tirelessly to promote treatment progress. He is also a father and is constantly balancing between protection, and encouragement of his daughter Annie and all those in the FA community. Listen as Tom shares his perspective on parenting, advocating, and working toward a treatment.
Amy Grover has spent more than a decade in the rare disease space - cultivating her passion for helping others in the nonprofit world until recently. Now, Amy is using her expertise and heart of gold to bring patients and industry together in pursuit of better outcomes. As the newly appointed Senior Director of Patient Advocacy with Catalyst Pharmaceuticals, Amy is well-positioned to help meet the needs of patients while advancing treatments and services within the for-profit arena. Amy joins us for a casual conversation touching on the Niners vs. Rams, motherhood, and her work at Catalyst Pharmaceuticals.
Completing tasks is about focus. If we take our eye off the ball, that's when we get off track. Listen as the Dudes talk about how this principle applies in their life.
Participate in Disability Book Week, April 23-29.
Joe Sooch points out that we only have one life to live so we better make the most of it. He has a rare disease called Fibrodysplasia ossificans progressiva (FOP) - a genetic disorder that causes soft tissues to transform permanently into bone.
Joe uses a wheelchair and FOP has limited his physical abilities in many other ways. However he is determined to make the most of the time he's been given.
Find Joe Sooch on YouTube or Instagram.
Listen to Joe interview us on his podcast Two Mics, One Joe Sooch.
Some fears are healthy and they keep us from getting hurt. Some fears are totally legit but they may keep us from enjoying the little things in life. Some fears are a little ridiculous and silly.
Promising treatments for many rare diseases are on the horizon. As they start to become a reality, it's important for us to adjust our expectations of what symptoms could potentially be relieved.
Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.
March is Hemophilia Awareness Month!
Most people would call him an accomplished musician - Max Feinstein says he's been a noisemaker his whole life. Recently he has been using music to express his journey with Hemophilia and connect with others in the Rare Disease community.
Rude online comments are just part of the challenge for interabled couple and YouTubers Shane and Hannah Burcaw. Battling ableism has become part of the struggle but they continue to be an incredible example for the rare disease and disability communities with their marriage and their YouTube channel: Squirmy and Grubs which has over 900k subscribers. Check out their collaboration with Genentech at: smamyway.com.
Ennis Rook Bashe writes fantasy stories featuring disabled characters partly for social justice but mainly because "it's just fun." We certainly had fun in this conversation. Learn more about Ennis and their latest work at ennisrookebashe.com.
While seeking to live beyond circumstances, we often look past the challenges of our situation. Maybe this is good, maybe it's bad, maybe both...
As the Dudes ponder this thought, they discuss reasons to remain optimistic. Enjoy!
BTW, Feb 28 is Rare Disease Day
Our friend Erin Pieper wrote a book called Dismantling the Disability (release date 2/22/22) and in this episode she sets up the discussion by wondering what the world would be like if everything were set up for people with disabilities.
We all have goals but we may never reach them unless we have a specific strategy to reach them. In this episode, the dudes discuss a few of their 5 and 10 year goals anfd a few straqtegies to get them there.
Turning 40 caused both of us to reflect on everything we’ve done up to this point. Do we have regrets?
We can’t change the past but we can decide what we want and go after it from this day forward.
-2022 Calendars are on the way! Visit our “Shop” to orders yours!
https://youtu.be/6dIEr2TZIQ8
Turning 40 caused both of us to reflect on everything we've done up to this point. Do we have regrets?
We can't change the past but we can decide what we want and go after it from this day forward.
In this 2DD Forum, our Friends Jake and Glenn taught us a lot about the mindset required to live a fulfilling life with Duchenne or any challenge. We enjoyed the conversation and we hope you do too.
The CureDuchenne FUTURES Conference focuses on bringing education, resources, and connection to the Duchenne Muscular Dystrophy community. The 2021 agenda centered on Quality of Life. To watch the video version of this discussion, click here.
The CureDuchenne FUTURES Conference focuses on bringing education, resources, and connection to the Duchenne Muscular Dystrophy community. The 2021 agenda centered on Quality of Life.
In this 2DD Forum, our Friends Jake and Glen taught us a lot about the mindset required to live a fulfilling life with Duchenne or any challenge. We enjoyed the conversation and we hope you do too.
Flat tire! Stranded on the side of the highway.
If you have a mobility challenge, or more than two people, you may not be able to ride in the tow truck with your car. That’s where Mobility Roadside Assistance can help. They will send an accessible vehicle to pick you up.
Listen to find out all about their service from their CRO, Marcus Norton.
*GIVEAWAY*
We’re stoked to be partnering with Mobility Roadside Assistance to give away a 1 year subscription to their premium service.
The winner will be chosen Wednesday, December 15.
There are a few ways to enter:
- Follow us on Instagram and tag a friend in the comments of any post about this episode. The more tags the more entries.
- Leave a comment on any of our Instagram posts about this episode.
- Head to our website, twodisableddudes.com, and join our Mailing List.
Extra entry for sharing our episode post in your instagram story. Be sure you “share” or remember to tag us so we’re sure to see it!
Flat tire! Stranded on the side of the highway.
If you have a mobility challenge, or more than two people, you may not be able to ride in the tow truck with your car. That's where Mobility Roadside Assistance can help. They will send an accessible vehicle to pick you up.
Listen to find out all about their service from their CRO, Marcus Norton.
Stan Crooke has been in the drug development game for a long time. He is the founder of Ionis Pharmaceuticals and now he has pioneered a method to develop and provide medicines to Ultra Rare communities of 30 patients or less. This idea blew our minds and I think you will enjoy hearing from Stan.
Links:
N-Lorem Foundation
Undiagnosed Disease Network
Stan Crooke has been in the drug development game for a long time. He is the founder of Ionis Pharmaceuticals and now he has pioneered a method to develop and provide medicines to Ultra Rare communities of 30 patients or less. This idea blew our minds and I think you will enjoy hearing from Stan.
Dealing with a Chronic disease can be a lonely situation, especially for young people who may feel misunderstood. That’s why Denise Archilla started Chronic Warrior Coaching and the Chronic Warrior Collective – to have a place for kids to be seen and heard. Listen to hear about some of the struggles of a Chronic Warrior and how Denise is addressing those needs.
Links for this episode:
Chronic Warrior Collective
Nebraska Ataxia
Dealing with a Chronic disease can be a lonely situation, especially for young people who may feel misunderstood. That's why Denise Archilla started Chronic Warrior Coaching and the Chronic Warrior Collective - to have a place for kids to be seen and heard. Listen to hear about some of the struggles of a Chronic Warrior and how Denise is addressing those needs.
Links for this episode:
Chronic Warrior Collective
Nebraska Ataxia
In episodes 155 and 157, we talked about the symptoms of Friedreich’s ataxia (FA) and how they affect us, especially the mental and emotional aspect of dealing with the challenges. We both experienced some relief in the following ew weeks – merely because we got that stuff off our chest. Why is that? Listen as we discuss.
In episodes 155 and 157, we talked about the symptoms of Friedreich's ataxia (FA) and how they affect us, especially the mental and emotional aspect of dealing with the challenges. We both experienced some relief in the following ew weeks - merely because we got that stuff off our chest. Why is that? Listen as we discuss.
Patrick James Lynch is CEO of Bloodstream Media and creator of award winning documentaries, TV Shows, podcasts, and other media that entertains and educates about rare disease. He is a big presence in the Hemophilia community but has a certain resistance to becoming “Mr. Hemophilia”. We really enjoyed the conversation and we hope you do too!
https://youtu.be/ZVw9lcyM_bY
Some of Patrick’s work:
Blood Stream Media
The Blog Post we talked about in the episode.
Stop the Bleeding Web Series
Bombardier Blood documentary
My Beautiful Stutter documentary
Patrick James Lynch is CEO of Bloodstream Media and creator of award winning documentaries, TV Shows, podcasts, and other media that entertains and educates about rare disease. He is a big presence in the Hemophilia community but has a certain resistance to becoming "Mr. Hemophilia". We really enjoyed the conversation and we hope you do too!
Some of Patrick's work:
Blood Stream Media
Stop the Bleeding Web Series
Bombardier Blood documentary
My Beautiful Stutter documentary
Today we feature episode 87 – Superheroes from our friend Effie Parks at the Once Upon a Gene Podcast. This episode features a few different people and stories about the superheroes in their lives.
Check out our interview with Effie in an earlier episode: Episode 129.
Today we feature episode 87 - Superheroes from our friend Effie Parks at the Once Upon a Gene Podcast. This episode features a few different people and stories about the superheroes in their lives.
Check out our interview with Effie in an earlier episode: Episode 129.
It is understood that mental health is of huge importance in life, and it can be amplified in the rare disease community. And then add society’s pull on the situation – Men are seemingly expected to be stoic and strong no matter what. You’ve got a recipe for a particularly difficult situation. That’s what David Ross is addressing with his men’s group focused on Men’s Mental Health in Rare disease. Listen to find out more.
It is understood that mental health is of huge importance in life, and it can be amplified in the rare disease community. And then add society's pull on the situation - Men are seemingly expected to be stoic and strong no matter what. You've got a recipe for a particularly difficult situation. That's what David Ross is addressing with his men's group focused on Men's Mental Health in Rare disease. Listen to find out more.
Money plays a roll in nearly all situations in life – especially when you factor in rare disease or another medical issue. In this episode the Dudes talk about how money and planning for the future factors into different aspects of their lives – including the age old question “can money buy you love?”
Money is a factor in nearly all situations in life - especially when you factor in rare disease or another medical issue. In this episode the Dudes talk about how money and planning for the future factors into different aspects of their lives - including the age old question "can money buy you love?"
Gene Therapy treatments have the potential to make a profound impact in rare disease. However, these potentially permanent therapies present unique considerations for any participant in clinical trials.
When we were presented with the opportunity to moderate a panel of people who either participated in gene therapy studies or had extensive knowledge to share on this topic, we jumped on it!
AVROBIO’s vision is to bring personalized gene therapy to the world. They aim to prevent, halt or reverse disease throughout the body with a single dose of gene therapy designed to drive durable expression of therapeutic protein, even in hard-to-reach tissues and organs.
Thanks to the AVROBIO team for a great day of patient advocacy. We feel so honored to be a part of these conferences and always take so much away from them. And a huge thank you to panelists Jordan, Darren, and Kim.
For additional information, visit www.avrobio.com.
Thanks to the AVROBIO team for a great day of patient advocacy. We feel so honored to be a part of these conferences and always take so much away from them. And a huge thank you to panelists Jordan, Darren, and Kim.
Gene Therapy treatments have the potential to make a profound impact in rare disease. However, these potentially permanent therapies present unique considerations for any participant in clinical trials.
When we were presented with the opportunity to moderate a panel of people who either participated in gene therapy studies or had extensive knowledge to share on this topic, we jumped on it!
AVROBIO’s vision is to bring personalized gene therapy to the world. They aim to prevent, halt or reverse disease throughout the body with a single dose of gene therapy designed to drive durable expression of therapeutic protein, even in hard-to-reach tissues and organs including brain, muscle, and bone. AVROBIO’s ex vivo lentiviral gene therapy pipeline includes clinical programs in Fabry disease, Gaucher disease type 1 and cystinosis, as well as preclinical programs in Hunter syndrome, Gaucher disease type 3 and Pompe disease.
For additional information, visit www.avrobio.com
Marfan Foundation Annual Conference 2019
The Marfan Foundation is currently celebrating 40 years of service to patients and families affected by Marfan Syndrome and other related conditions.
We had the honor of participating in their 36th annual conference with a virtual discussion featuring 4 panelists who have each been significantly affected by rare disease.
Marfan syndrome is a genetic condition that affects the body’s connective tissue. Connective tissue helps to hold the body’s cells, organs, and tissues together and also helps to control how the body grows and develops.
There are several disorders related to Marfan that cause people to struggle with the same or similar physical problems, and anyone affected by these conditions needs an early and accurate diagnosis. Please visit www.marfan.org for more information about Marfan, Loeys Dietz, and Vascular Ehlers Danlos Syndrome.
Listen as Leah, Adrianna, Kristy and Micah share openly about their vastly different experiences but also their shared and wildly optimistic, fulfilling lives, despite the challenges and unpredictability of their conditions.
The Marfan Foundation is currently celebrating 40 years of service to patients and families affected by Marfan Syndrome and other related conditions.
We had the honor of participating in their 36th annual conference with a virtual discussion featuring 4 panelists who have each been significantly affected by rare disease.
Marfan syndrome is a genetic condition that affects the body’s connective tissue. Connective tissue helps to hold the body’s cells, organs, and tissues together and also helps to control how the body grows and develops.
There are several disorders related to Marfan that cause people to struggle with the same or similar physical problems, and anyone affected by these conditions needs an early and accurate diagnosis. Please visit www.marfan.org for more information about Marfan, Loeys Dietz, and Vascular Ehlers Danlos Syndrome.
Listen as Leah, Adrianna, Kristy and Micah share openly about their vastly different experiences but also their shared and wildly optimistic, fulfilling lives, despite the challenges and unpredictability of their conditions.
Combined, these two Dudes have 37 years of experience living with Friedreich's ataxia/rare disease/disability, and we made some observations along the way.
In this episode, borrowing an idea we found in our friend, Kendall Harvey's column on Friedreich's Ataxia News, we explore what we would say to our newly diagnosed selves.
It's a very emotional episode and we hope you find value in it.
Old men know a lot.
Combined, these two Dudes have 37 years of experience living with Friedreich's ataxia/rare disease/disability, and we made some observations along the way.
In this episode, using an idea we found in our friend, Kendall Harvey's column on Friedreich's Ataxia News, we explore what we would say to our newly diagnosed selves.
It's a very emotional episode and we hope you find value in it.
Anthony DeVergillo describes himself as an optimist. He sees a problem and inserts himself to find a solution. Specifically in the area of video game accessibility, Anthony is motivated to make an impact with the joystick he invented to allow people with disabilities access to the games they love. The project is called Overjoyed.
Listen to our interview with Anthony and get motivated to improve the world around you as Sean tries to wrap his head around airplane accessibility.
Links:
Anthony's Interview for The Playability Initiative.
Anthony on social media:
TwitterLinkedIn
Connect with Anthony and others: https://ourodyssey.org/
Anthony DeVergillo describes himself as an optimist. He sees a problem and inserts himself to find a solution. Specifically in the area of video game accessibility, Anthony is motivated to make an impact with the joystick he invented to allow people with disabilities access to the games they love. The project is called Overjoyed.
Listen to our interview with Anthony and get motivated to improve the world around you as Sean tries to wrap his head around airplane accessibility.
Links:
Anthony's Interview for The Playability Initiative.
Anthony on social media:
Connect with Anthony and others: https://ourodyssey.org/
Describing our challenges to another person is a powerful way to face them and find a way to think around them so these challenges don't become a roadblock in our lives. The Dudes feel fortunate to have each other to share with and to have you listening!
Discussion questions provided by Branding Science
Describing our challenges to another person is a powerful way to face them and find a way to think around them so these challenges don't become a roadblock in our lives. The Dudes feel fortunate to have each other to share with and to have you listening!
Discussion questions provided by Branding Science
August is SMA Awareness Month, so we had a conversation with Nick Sinagra to learn about SMA and His Journey with this rare disease. Nick is a true leader for all the things he has accomplished and continues to accomplish, and for the attitude he brings to all that he does. Plus hear about Nick's experience with Spinraza, a drug developed and FDA approved to treat SMA.
Nick's website: https://ableitpros.com/
Nick in the news:
CBS Pittsburgh: The Importance of SMA Awareness Month
Authority Magazine: Unstoppable Nick Sinagra
Pharmacy Times: Living With and Treatment Options for Spinal Muscular Atrophy
August is SMA Awareness Month so we had a conversation with Nick Sinagra to learn about SMA and his journey with this rare disease. Nick is a true leader for all the things he has accomplished and continues to accomplish, and for the attitude he brings to all that he does. Plus hear about Nick's experience with Spinraza, a drug developed and FDA approved to treat SMA.
This was the 43rd annual National Tay-Sachs and Allied Diseases (NTSAD) family conference and we were honored to moderate the opening session - a panel with Sarah, Kevin, and Staci.
The video that Sean referenced near the beginning of the episode: https://www.youtube.com/watch?v=XFEXsquCA8U
Learn More about the family conference at https://ntsad.org/index.php/2021-annual-family-conference
More about NTSAD at https://ntsad.org
This was the 43rd annual National Taysachs and Allied Diseases (NTSAD) annual conference and we were honored to moderate a panel with Sarah, Kevin, and Staci.
The video that Sean referenced near the beginning of the episode: https://www.youtube.com/watch?v=XFEXsquCA8U
Learn More about the family conference at https://ntsad.org/index.php/2021-annual-family-conference
More about NTSAD at https://ntsad.org
User reviews and social media can be used to affect change in business and society. It gets out of hand when users take advantage of the power that is in their hands. Listen as the dudes discuss Social Media and this new thing called Bluetooth.
Check out We Need a Mouse for a positive use of social media by our friend Luke Rosen and KIF1A.
User reviews and social media can be used to affect change in business and society. It gets out of hand when users take advantage of the power that is in their hands. Listen as the dudes discuss Social Media and this new thing called Bluetooth.
Check out We Need a Mouse for a positive use of social media by our friend Luke Rosen and KIF1A.
Season 6 starts now with the introduction of a new segment called 'Picks for Season Six'. Today the Dudes pick their favorite podcasts of the moment.
Kyle: Conan O'Brien Needs a Friend
Sean: At the Table with Patrick Lencioni
Sean and Kyle talk about some of the things they've been up to this summer which leads to some observations about specific areas of life the pandemic has affected. Enjoy!
This summer, the Dudes rode over the bay bridge in CA with their friend Scott Wheelwright and a few others.
If you'd like your very own 2DD shirt, click HERE.
Season 6 starts now with the introduction of a new segment called 'Picks for Season Six'. Today the Dudes pick their favorite podcasts of the moment.
Kyle: Conan O'Brien Needs a Friend
Sean: At the Table with Patrick Lencioni
Sean and Kyle talk about some of the things they've been up to this summer which leads to some observations about specific areas of life the pandemic has affected. Enjoy!
Sean just turned 40. Happy Birthday Sean! Kyle turns 40 in a few months. So what does this have to do with drugs? The milestone brings a question into focus: What if the treatment or cure for FA doesn't come in our lifetime. Listen for thoughts from the dudes.
Sean just turned 40. Happy Birthday Sean! Kyle turns 40 in a few months. This milestone brings a question into focus: What if the treatment or cure for FA doesn't come in our lifetime. Listen for thoughts from the dudes.
Aaron Smith is uncomfortable on stage as himself, but as the King of Rock and Roll he owns the stage.
Aaron was bullied when he was young because he was different than other kids. He didn't care about the same things and sometimes he didn't say the right things. His mind was somewhere else.
Somewhere along the way he fell in love with the idea that people made a living from impersonating Elvis Presley. He gave it a shot and he was hooked.
Listen as Aaron talks about becoming an Elvis tribute artist amidst the challenges of living with autism.
Connect with Aaron: https://www.facebook.com/AaronElvistribute
Learn more about Autism: https://www.autismspeaks.org/
Aaron Smith is uncomfortable on stage as himself, but as the King of Rock and Roll he owns the stage.
Aaron was bullied when he was young because he was different than other kids. He didn't care about the same things and sometimes he didn't say the right things. His mind was somewhere else.
Somewhere along the way he fell in love with the idea that people made a living from impersonating Elvis Presley. He gave it a shot and he was hooked.
Listen as Aaron talks about becoming an Elvis tribute artist amidst the challenges of living with autism.
Connect with Aaron: https://www.facebook.com/AaronElvistribute
Learn more about Autism: https://www.autismspeaks.org/
The Top 5 Pet Peeves get Sean a little worked up so he continues with a rant about his gym and accessibility. A conversation with the manager leaves Sean unsatisfied because he's not confident anything will change as a result of his feedback. He wants everyone to know that he remained calm during the interaction. We'll count that as a win!
The Top 5 Pet Peeves get Sean a little worked up so he continues with a rant about his gym and accessibility. A conversation with the manager leaves Sean unsatisfied because he's not confident anything will change as a result of his feedback. He wants everyone to know that he remained calm during the interaction. We'll count that as a win!
Tim Walbert is CEO at Horizon Therapeutics. He has been at the helm as they've taken several products to market. Listen as he talks about the different aspects of drug development and pricing. Tim also lets the dudes know that perhaps Sean's face needs to replace Kyle's on the wall at Horizon.
Horizon Therapeutics - https://www.horizontherapeutics.com/
Tim Walbert is CEO at Horizon Therapeutics. He has been at the helm as they've taken several products to market. Listen as he talks about the different aspects of drug development and pricing. Tim also lets the dudes know that perhaps Sean's face needs to replace Kyle's on the wall at Horizon.
As a clinical coordinator at Children's Hospital of Philadelphia (CHOP), Jen Farmer gained years of experience designing and operating clinical trials. Now as the CEO at the Friedreich's Ataxia Research Alliance (FARA) she uses that experience to design effective trials for the Friedreich's ataxia (FA) community - and she nicely puts Sean in his place when she states "the rules are there for your safety".
Jen shares the principles that guide clinical trials and a few tips for those who choose to participate.
FARA - curefa.org
As a clinical coordinator at Children's Hospital of Philadelphia (CHOP), Jen Farmer gained years of experience designing and operating clinical trials. Now as the CEO at the Friedreich's Ataxia Research Alliance (FARA) she uses that experience to design effective trials for the Friedreich's ataxia (FA) community - and she nicely puts Sean in his place when she states "the rules are there for your safety".
Jen shares the principles that guide clinical trials and a few tips for those who choose to participate.
FARA - curefa.org
The pre-clinical stage of drug development is largely about safety - answering the question 'will a drug be well tolerated in people?' However, Kristina Bowyer of Ionis Pharmaceuticals helps us understand that the patient voice should be integrated into every stage of the process, including pre-clinical. Plus, Sean loses his focus. Enjoy!
Ionis Pharmaceuticals: https://www.ionispharma.com/
The pre-clinical stage of drug development is largely about safety - answering the question 'will a drug be well tolerated in people?' However, Kristina Bowyer of Ionis Pharmaceuticals helps us understand that the patient voice should be integrated into every stage of the process, including pre-clinical. Plus, Sean loses his focus. Enjoy!
John Crowley is the CEO of Amicus Therapeutics. He is also a funny and compassionate rare disease Dad. Join us as we learn life lessons and how to start a company - and Sean learns that a million is quite large.
Amicus Therapeutics: https://www.amicusrx.com/
Extraordinary Measures (John's story), starring Brendan Fraser and Harrison Ford: https://g.co/kgs/u7uFgw
Part 2 of our Drug Development Series introduces John Crowley, the CEO of Amicus Therapeutics. He is also a funny and compassionate rare disease Dad. Join us as we learn life lessons and how to start a company - and Sean learns that a million is quite large.
Amicus Therapeutics: https://www.amicusrx.com/
Extraordinary Measures (John's story), starring Brendan Fraser and Harrison Ford: https://g.co/kgs/u7uFgw
This is the LAUNCH of the Two Disabled Dudes Drug Development Series. We have 5 experts lined up to field our questions about the process and how we as patients can insert our influence.
This episode is an overview of the Drug Development Process which helps us understand how to avoid spending half a billion dollars on a dead end.
Barbara Tate is the Chief Scientific Officer for the Friedreich's Ataxia Research Alliance (FARA). She has an impressive resume and a great sense of humor. She went from academic science, to big pharma, to venture capital, to nonprofit, and now she graciously shares her knowledge and wisdom with us.
Our next episode features John Crowley who is played by Brendan Fraser in the movie Extraordinary Measures.
This is the LAUNCH of the Two Disabled Dudes Drug Development Series. We have 5 experts lined up to field our questions about the process and how we as patients can insert our influence.
This episode is an overview of the Drug Development Process which helps us understand how to avoid spending half a billion dollars on a dead end.
Barbara Tate is the Chief Scientific Officer for the Friedreich's Ataxia Research Alliance (FARA). She has an impressive resume and a great sense of humor. She went from academic science, to big pharma, to venture capital, to nonprofit, and now she graciously shares her knowledge and wisdom with us.
Our next episode features John Crowley who is played by Brendan Fraser in the movie Extraordinary Measures.
How do we build an effective Global Rare Disease community? It all starts with sharing stories and ideas. Join the dudes as they hear Manish Gore's story about Alport Syndrome, and discuss the differences between the US and India and the Rare Disease World.
Manish's Resources:
Manish's Blog, Doting Beans: www.hope4kidneys.info
Organization for Rare Diseases India: www.ordindia.in
Mental Health, Zifcare, India: www.zifcare.com
Alport Syndrome Foundation of USA: www.alportsyndrome.org
Kidney Research UK: www.kidneyresearchuk.org
How do we build an effective Global Rare Disease community? It all starts with sharing stories and ideas. Join the dudes as they hear Manish Gore's story about Alport Syndrome, and discuss the differences between the US and India and the Rare Disease World.
A few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'. The discussion of this article lead to an exploration of issues on the endless video conference calls that have become a big part of our lives lately.
Kyle still thinks 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.
A few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'. The discussion of this article lead to an exploration of issues on the endless video conference calls that have become a big part of our lives lately.
Kyle still thinks the term 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.
We sent Shelley a 2DD 2021 Desk calendar. She sent back pictures of her brother, Jeff. That sparked a heartfelt conversation about her family and some of the experiences in her life with her brother. Join us as Shelley shares her experiences - you may end up with a few nuggets that make you a better person.
Shelley Bowen is Director, Family Services and Advocacy at the Barth Syndrome Foundation: https://barthsyndrome.org
We sent Shelley a 2DD 2021 Desk calendar. She sent back pictures of her brother. That sparked a heartfelt conversation about her family and some of the experiences in her life with her brother Jeff. Join us as Shelley shares her experiences - you may end up with a perspective that makes you a better person.
Shelley Bowen is the Director of Family Services and Advocacy for the Barth Syndrome Foundation: barthsyndrome.org
Sometimes we wish there was an instruction manual for life's transitions. How do we decide when it's time to make a transition to a walker or wheelchair, power chair, hand controls - and how does ego play into the situation?...Listen as the dudes discuss and search for answers.
Sean's column; No Good Excuse, "The 'Right' Time Can Be a Moving Target With a Progressive Disease."
Sometimes we wish there was an instruction manual for life's transitions. How do we decide when it's time to make a transition to a walker or wheelchair, power chair, hand controls...Listen as the dudes discuss and search for answers.
Sean's column; No Good Excuse, "The 'Right" Time Can Be a Moving Target With a Progressive Disease."
"There is real power in not caring what others think."
Ben's Friends is an online social network for people with rare diseases. Ben Munoz started it after suffering an AVM in 2006 and undergoing multiple brain surgeries. During his recovery he was feeling alone and scared so he reached out to others to form Ben's Friends. Ben joins the dudes to impart his knowledge and wisdom from his years of leading Ben's Friends and the company he created.
Ben's Friends: https://www.bensfriends.org/
Episode 69 of Once Upon a Gene: https://effieparks.com/podcast/episode-069-bens-friends
"There is real power in not caring what others think."
Ben's Friends is an online social network for people with rare diseases. Ben Munoz started it after suffering an AVM in 2006 and undergoing multiple brain surgeries. During his recovery he was feeling alone and scared so he reached out to others to form Ben's Friends. Ben joins the dudes to impart his knowledge and wisdom from his years of leading Ben's Friends and the company he created.
To honor Rare Disease Day, we invited our friend Dr. Al Freedman back on to talk about how people living with Rare Disease (like Kyle and Sean) can remain proud even if they are not proud of everything about themselves. Dr. Al says a big part of it is gratitude and focusing on your strengths. Listen to hear all the details including the strengths of his son Jack who has been living with SMA for 25 years.
Learn about Rare Disease Day: rarediseaseday.org
Reach out to Dr. Al at: freedmancounseling.com
Listen to Dr. Al's first interview at: 128 - Mental Health and Rare Disease
To honor Rare Disease Day, we invited our friend Dr. Al Freedman back on to talk about how people living with Rare Disease (like Kyle and Sean) can remain proud even if they are not proud of everything about themselves. Dr. Al says a big part of it is gratitude and focusing on your strengths. Listen to hear all the details including the strengths of his son Jack who has been living with SMA for 25 years.
Reach out to Dr. Al at: freedmancounseling.com
What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.
What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.
What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.
This is a 2 part episode so if you haven't listened to part 1, check it out.
What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.
This is a 2 part episode so if you haven't listened to part 1, check it out.
In the last couple episodes we talked about the importance of forming a vision for your future. This time we take it a step further with a few thoughts on how to put that vision into action.
In the last couple episodes we talked about the importance of forming a vision for your future. This time we take it a step further with a few thoughts on how to put that vision into action.
Last week we talked about the importance of creating a vision of what we want so we can work each day toward that goal.
An important piece of forming that vision is thinking about the things we don't want to avoid the ruts that are going to keep us from our goals.
Enjoy the conversation and don't forget to subscribe.
Last week we talked about the importance of creating a vision of what we want so we can work each day toward that goal.
An important piece of forming that vision is thinking about the things we don't want to avoid the ruts that are going to keep us from our goals.
Enjoy the conversation and don't forget to subscribe.
Where do you want to live? How much money do you want to make? How big is your house gonna be? Car? Job?
It's important to dream about these things but none of it is going to happen on accident.
In this episode Sean and Kyle talk about what they want out of life and the importance of taking steps today toward those things.
They also introduce a new segment: Top 5.
This show is possible with your support. If you enjoy listening to Sean and Kyle please consider making a DONATION.
2021 is upon us and it's time to plan ahead. Get inspiration for your year with our 2021 calendar available in the 2DD store: https://twodisableddudes.com/product/2dd-calendar-2021/
Where do you want to live? How much money do you want to make? How big is your house gonna be? Car? Job?
It's important to dream about these things but none of it is going to happen on accident.
In this episode Sean and Kyle talk about what they want out of life and the importance of taking steps today toward those things.
They also introduce a new segment for the show with their Top 5 Movies. Enjoy!
Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network. Listen to our 4 panelists for perspectives on living with XLH that relate to any walk of life.
If your organization is planning to engage your community in 2021 either live or virtually, the 2DD Forum may be a good fit. Check out an overview at twodisableddudes.com/forum and reach out to us at thedudes@twodisableddudes.com to discuss. Talk to you soon!
If you'd like to read a transcript of this episode, click here:
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Sean: Welcome to the Two Disabled Dudes podcast. Kyle: We believe life is about how we react. Sean: XLH is a rare disease that Kyle and I didn't know much about until we were invited to be a part of XLH week in October 2020. It was a week of programming for the XLH community, full of education and fellowship. We thoroughly enjoyed learning from this panel of incredible patients, advocates, parents, and new friends. Enjoy the discussion. Sean: We are excited to be a part of the XLH Week and we're honored to be a part of the conversation today. Over the years, Kyle and I have experienced the power of support and connection through events, just like this one; in-person, virtual, getting coffee with one or two people, whatever it may be, where we have the opportunity to discuss our challenges, celebrate our wins, however big or small they may be. And, of course, collectively explore the ways in which we can move forward in life. Sean: We're honored to dialogue with a group of amazing individuals today, closely connected with the XLH community. We'll take a moment to allow each of them to introduce themselves. I'm going to head down here, bottom screen. JoBeth, would you mind stepping up? JoBeth: Hey, everybody. I'm JoBeth Sousa. I live in Lewisville, North Carolina. I have two children. I have an 18 year old son, who attends Wake Forest, and he does not have XLH. I do have a 13 year old daughter who was a spontaneous case. We diagnosed her when she was approximately 18 months old. JoBeth: I am here on the panel today as a caregiver. I also am a member of the Board of Directors for XLH, as well. Kara Beth was slow to walk, which is how we diagnosed her. She was in-toeing and dragging her left leg whenever she was learning how to walk. JoBeth: I had gone with another family on a trip to the beach, and they had a son that was about the same age as Kara Beth. We were just comparing, developmentally, the children and how different their son was compared to Kara Beth. He was toddling everywhere and KB was not. JoBeth: We talked to that family and they suggested that we just take her, pay our co-pay, and go see a specialist, and see if we could figure out what was going on. Fortunately, we actually saw an orthopedic doctor, and he did a simple blood test and identified that her phosphorous level was too low. He was the one who was able to diagnose her and tell us about her disease. JoBeth: When I left the office, I started spending some time researching on the internet and I found the XLH Network, which is how I got to the network. Kyle: And, JoBeth, we are going to talk about this in a little bit, but just so everybody knows, your wonderful daughter is an amazing soccer player, despite XLH. I love that so much. JoBeth: Yes. Actually, I am not in North Carolina today. I'm in Virginia, at a soccer tournament. Kyle: Nice. JoBeth: Her team has won two games already today, which means we get to play for the championship tomorrow. Good times. Kyle: Love it. Sean: There was a part of me that thought, "Man, her room looks like a hotel. It's so neat, and pristine, and everything is perfect with just the style." JoBeth: [crosstalk 00:04:34] Yes, I had maid service. Yeah, I had maid service about six minutes ago, so it looks very nice. Looks much better than it did about an hour ago. Kyle: Yeah. No, everybody, Sean lives in a hotel, too.
Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network. Listen to our 4 panelists for perspectives on living with XLH that relate to any walk of life.
If your organization is planning to engage your community in 2021 either live or virtually, the 2DD Forum may be a good fit. Check out an overview at twodisableddudes.com/forum and reach out to us at thedudes@twodisableddudes.com to discuss. Talk to you soon!
It is clear to these dudes that the patient is at the center of everything that happens at Ultragenyx Pharmaceutical. That's why we are proud to have moderated a panel at the virtual Ultragenyx Rare Family Day this year.
https://www.ultragenyx.com/
It is clear to these dudes that the patient is at the center of everything that happens at Ultragenyx Pharmaceutical. That's why we are proud to have moderated a panel at the virtual Ultragenyx Rare Family Day This Year.
https://www.ultragenyx.com/
We all know that Sean likes to complain, and apparently Kyle does too. Listen as The Dudes get a few things off their chest. They were a bit relieved after recording this episode and hopefully you will feel relieved after listening.
The video sean mentioned in the episode:
https://youtu.be/j7LBBjZBcLs
We all know that Sean likes to complain, and apparently Kyle Does too. Listen to help The Dudes get a few things off their chest. They were a bit relieved after recording this episode and hopefully you will feel relieved after listening.
Effie Parks immediately related to Rare Disease podcasts when her son Ford was diagnosed with CTNNB1.
However she soon caught up with all of the episodes and came to the end of her life line. So she created the thing that she needed the most. She discusses disability as diversity and connects with parents and many others in the Rare Community through her incredible podcast Once Upon a Gene. Listen to this conversation between Effie and the Dudes to get insight on the value of connecting to others.
Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1. However she soon caught up with all of the episodes and came to the end of her lifeline. So she created the thing that she needed the most. She connects with other rare disease parents and many others in the Rare Community through her incredible podcast Once Upon a Gene. Listen to this episode to get insight on the value of connecting to others.
In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al.
Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adult son with a rare disease. He speaks at conferences nationally on challenges facing families of children with special health care needs, and provides consultation to health care & rare disease organizations, pharmaceutical companies, and schools. As a practicing psychologist in independent practice in the Philadelphia area, Dr. Freedman has provided counseling services to children, adolescents, adults, and families for over 25 years. Dr. Freedman's 25-year-old son, Jack, lives with Spinal Muscular Atrophy.
More About Dr. Al: https://www.freedmancounseling.com/albert-freedman-ph-d
Dr. Al's practice: www.freedmancounseling.com
In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al.
Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adult son with a rare disease. He speaks at conferences nationally on challenges facing families of children with special health care needs, and provides consultation to health care & rare disease organizations, pharmaceutical companies, and schools. As a practicing psychologist in independent practice in the Philadelphia area, Dr. Freedman has provided counseling services to children, adolescents, adults, and families for over 25 years. Dr. Freedman's 25-year-old son, Jack, lives with Spinal Muscular Atrophy.
More About Dr. Al: https://www.freedmancounseling.com/albert-freedman-ph-d
Dr. Al's practice: www.freedmancounseling.com
Kyle and Sean realize that the degenerative nature of Friedreich's ataxia (FA) has an impact on the timing of big decisions in their life. But does it cause them to jump into some things too quickly?
Kyle moving away from Sacramento December 2010
Kyle thinks it caused him to get in over his head when he bought his first home. Is he doing it again? Listen as The Dudes wrestle with this topic.
If you like this one, should try: 123 – Why Do We Keep Our True Selves Hidden?
Kyle and Sean realize that the degenerative nature of Friedreich's ataxia (FA) has an impact on the timing of big decisions in their life. But does it cause them to jump into some things too quickly. Kyle thinks it caused him to get in over his head when he bought his first home. Is he doing it again? Listen as The Dudes wrestle with this topic.
https://youtu.be/0daPZUzDt4o
Finding the strength to keep moving after a heart wrenching loss is a prime example of living life beyond circumstances.
Via chrisdoveton.com: Chris and Anne are enjoying a loving marriage in the prime of their lives when Anne is diagnosed with a rare and fatal genetic disease. For ten years, Chris and Anne endure this terrible secret alone.
After Anne's death, Chris, ravaged by crippling grief, realises that his survival depends upon him ridding himself of his stiff upper lip. He must learn to open his heart and cry.
Saved from the depths of misery by life-saving therapy, he discovers a life beyond despair, rekindles his lapsed faith and finds love again.
Join us for a heartfelt conversation with Chris Doveton.
Learn more: chrisdoveton.com
Get the book on Amazon.
Finding the strength to keep moving after a heart wrenching loss is a prime example of living life beyond circumstances.
Chris Doveton and Anne are enjoying a loving marriage in the prime of their lives when Anne is diagnosed with a rare and fatal genetic disease. For ten years, Chris and Anne endure this terrible secret alone.
After Anne's death, Chris, ravaged by crippling grief, realises that his survival depends upon him ridding himself of his stiff upper lip. He must learn to open his heart and cry.
Saved from the depths of misery by life-saving therapy, he discovers a life beyond despair, rekindles his lapsed faith and finds love again.
Join us for a heartfelt conversation with Chris Doveton.
Learn more: chrisdoveton.com
Get the book on Amazon.
Sean tells yet another story of someone thinking he is drunk, but this time the guy gets a little aggressive. Listen to hear the whole story and Sean's interactions with the landscaping company that the guy works for.
If you enjoy this story of harsh misjudgement, you might enjoy the episode about Debra: 114 – Don’t Judge a Dude by His Wheelchair
Sean tells yet another story of someone thinking he is drunk, but this time the guy gets a little aggressive. Listen to hear the whole story and Sean's interactions with the landscaping company that the guy works for.
Cystinosis is a rare disease that causes life altering damage to the kidneys, eyes, muscles, pancreas and brain. Clint Moore's son, Chandler, lives with the rare disease. That's why Clint walks 57 miles on 5/7 to raise funds and awareness. Listen as the dudes discuss some life principles and talk about Clint's moving documentary that tells his family's story.
Learn about the Cystinosis Research Network: cystinosis.org
Watch the documentary:
https://youtu.be/YHnoBbbg4Ao
Cystinosis is a rare disease that causes life altering damage to the kidneys, eyes, muscles, pancreas, and brain. Clint Moore's son, Chandler liver with the rare disease. That's why Clint walks 57 miles on 5/7 to raise funds and awareness. Listen as the dudes discuss some life principles and talk about Clint's moving documentary that tells his family's story.
Visit the Cystinosis Research Network: https://cystinosis.org/
Watch the Documentary: https://youtu.be/YHnoBbbg4Ao
Anyone who has listened to this podcast before has heard The Dudes go on and on about the power of community and the importance of connecting to others. So why is our first reaction to pull away when things get hard? Denial? Pride? Self-preservation? Fear? Listen as the dudes break down this complex topic. They probably need some professional help...
This topic all started with a little column Sean wrote: https://friedreichsataxianews.com/2020/09/29/connecting-others-helps-us-move-forward/
Anyone who has listened to this podcast before has heard The Dudes go on and on about the power of community and the importance of connecting to others. So why is our first reaction to pull away when things get hard? Denial? Pride? Self-preservation? Fear? Listen as the dudes try to break down this complex topic. They probably need some professional help...
This topic all started with a little column Sean wrote: https://friedreichsataxianews.com/2020/09/29/connecting-others-helps-us-move-forward/
Government programs such as Social Security provide essential services for people with disabilities. But navigating through the bureaucracy can be a nightmare. That's why there are companies such as Allsup Disability Insurance Services and people like Mary Dale Walters - to help us make sense of it all! Listen as she gives us a great start to the conversation and provides resources for where to find out more.
https://www.allsup.com/
Find the e-book she mentioned here: https://www.truehelp.com/
Government programs such as Social Security provide essential services for people with disabilities. But navigating through the bureaucracy can be a nightmare. That's why there are companies such as Allsup Disability Insurance Services and people like Mary Dale Walters - to help us make sense of it all! Listen as she gives us a great start to the conversation and provides resources for where to find out more.
https://www.allsup.com/
Using our collective effort. participants in the rideATAXIA Global Challenge will power the team around the globe in 30 days. During this time the team will be introducing all of us to the brilliant minds behind the effort to treat and cure Friedreich's Ataxia. Listen to find out more from 4 of our friends.
https://youtu.be/iSpCc42Pq5o
Get more info and register at rideataxia.org/globalchallenge or join Team #CrankinWithKyle HERE.Join us on Strava to contribute to the goal of traveling around the globe!Cycling - https://www.strava.com/clubs/710903Running - https://www.strava.com/clubs/617708Any other activity via the activity log - https://rideataxia.org/files/GC-Activity-Log.pdf
Using our collective effort. participants in the rideATAXIA Global Challenge will power the team around the globe in 30 days. During this time the team will be introducing all of us to the brilliant minds behind the effort to treat and cure Friedreich's Ataxia.
- Get more info and register at rideataxia.org/globalchallenge or join Team #CrankinWithKyle HERE.
- Join us on Strava to contribute to the goal of traveling around the globe!
- Cycling - https://www.strava.com/clubs/710903
- Running - https://www.strava.com/clubs/617708
- Any other activity via the activity log - https://rideataxia.org/files/GC-Activity-Log.pdf
In 2012, at the age of 26, Kevin Schnurr was unexpectedly diagnosed with Alport syndrome after being rushed to the hospital with high blood pressure. After two years on peritoneal dialysis, he received a living donor kidney transplant from a close friend in May 2014.
Kevin’s desire to help others in the rare disease community led to him volunteering at Alport Syndrome Foundation (ASF) in 2012. He later served in a position as ASF Social Media Specialist in 2014 and part-time Patient Outreach Coordinator in 2016. Kevin currently serves as the Director of Communications & Patient Engagement (since Oct. 2019). He has facilitated the Teen Program at ASF Family Meetings, represented ASF at patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page. In his free time, Kevin loves playing guitar, attending concerts, and collecting/voraciously reading books.
Website: alportsyndrome.orgSocials: https://www.facebook.com/alportsyndromefoundation/
https://twitter.com/AlportSyndFndn
https://www.instagram.com/alportsyndromefndn/
https://www.youtube.com/user/TheASFoundation
Other links:https://www.organdonor.gov/https://www.donatelife.net/
In 2012, at the age of 26, Kevin Schnurr was unexpectedly diagnosed with Alport syndrome after being rushed to the hospital with high blood pressure. After two years on peritoneal dialysis, he received a living donor kidney transplant from a close friend in May 2014. Kevin’s desire to help others in the rare disease community led to him volunteering at Alport Syndrome Foundation (ASF) in 2012. He later served in a position as ASF Social Media Specialist in 2014 and part-time Patient Outreach Coordinator in 2016. Kevin currently serves as the Director of Communications & Patient Engagement (since Oct. 2019). He has facilitated the Teen Program at ASF Family Meetings, represented ASF at patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page. In his free time, Kevin loves playing guitar, attending concerts, and collecting/voraciously reading books.
Website: alportsyndrome.org
Socials: https://www.facebook.com/alportsyndromefoundation/
https://twitter.com/AlportSyndFndn
https://www.instagram.com/alportsyndromefndn/
https://www.youtube.com/user/TheASFoundation
Other links:
https://www.organdonor.gov/
https://www.donatelife.net/
Sean and Kyle are polar opposites in so many different ways. But this is a strength rather than a weakness. This week the Dudes discuss their differences and why they work well together.
Sean and Kyle are polar opposites in so many different ways. But this is a strength rather than a weakness. This week the Dudes discuss their differences and why they work well together.
Like it or not, communicating with smart devices has become a huge part of our lives. For people with disabilities, this communication can be an essential part of making it through the day. However these devices have a hard time understanding speech that is outside what they've heard before.
Google has launched an effort called Project Euphonia to retrain our devices to understand people who have speech impairments. Bob MacDonald is one of the leaders of the project and he joins The Dudes to talk about the project and how we can all help out.
To find out more and get involved visit teamgleason.org/projecteuphonia.
Like it or not, communicating with smart devices has become a huge part of our lives. For people with disabilities, this communication can be an essential part of making it through the day. However these devices have a hard time understanding speech that is outside what they've heard before.
Google has launched an effort called Project Euphonia to retrain our devices to understand people who have speech impairments. Bob MacDonald is one of the leaders of the project and he joins The Dudes to talk about the project and how we can all help out.
Blair Casey is the Assistant Executive Director of Team Gleason - an organization founded by former NFL player Steve Gleason. The organization is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible.
Blair joins the Dudes to talk about their work to support Google's Project Euphonia and how we can all work together to improve voice recognition for people who experience impaired speech.
To find out more and contribute your voice samples to the effort, visit: teamgleason.org/projecteuphonia.
https://youtu.be/OAdegPmkK-o
Blair Casey is the Assistant Executive Director of Team Gleason - an organization founded by former NFL player Steve Gleason. The organization is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible.
Blair joins the Dudes to talk about their work to support Google's Project Euphonia and how we can all work together to improve voice recognition for people who experience disarthria.
To find out more and contribute your voice samples to the effort, visit: teamgleason.org/projecteuphonia
BONUS episode!
We received a lot of comments about Episode 114 (the encounter with Debra) so we invited a few friends to join us to talk about the sometimes awkward interactions with strangers who may be uncomfortable with disability.
Friends who joined us are Shandra and Christian from Florida, Leona from Colorado, and Effie Parks (host of the Once Upon a Gene Podcast) from Seattle.
This bonus episode is unedited. Enjoy!
BONUS episode!
We received a lot of comments about Episode 114 (the encounter with Debora) so we invited a few friends to join us to talk about the sometimes awkward interactions with strangers who may be uncomfortable with disability.
Friends who joined us are Shandra and Christian from Florida, Leona from Colorado, and Effie Parks (host of the Once Upon a Gene Podcast) from Seattle.
This bonus episode is unedited. Enjoy!
If you could change something about yourself, what would it be?
In this episode, the dudes tackle this question as it relates to disability or as it relates to life in general. Listen and reach out if you have thoughts about this subject.
If you could change something about yourself, what would it be?
In this episode, the dudes tackle this question as it relates to disability or as it relates to life in general. Listen and reach out if you have thoughts about this subject.
How do we get moving again after a life threatening diagnosis? Start a YouTube Channel of course! That's what Katie did. She started connecting with the Vascular Ehlers Danlos Syndrome (VEDS) community and now she leads the VEDS Movement for the The Marfan Foundation. Listen to hear her story.
Find out more at thevedsmovement.org.
And find out more about the people behind the movement at translucentone.blog.
Where do we start after a life threatening diagnosis. Start a YouTube Channel of course! That's what Katie did. She started connecting with the Vascular Ehlers Danlos Syndrome (VEDS) community and now she leads the VEDS Movement for the The Marfan Foundation.
Find out more at thevedsmovement.org.
And find out more about the people behind the movement at translucentone.blog
Curiosity about someone's disability often comes from a good place but depending on how it is delivered, it can create awkward or even offensive situations.
This week the dudes struggle with how to react in these awkward situations.
It's good for someone to ask questions but there is a line somewhere. Listen for real life stories and honest conversation.
More about how we judge others in Episode 113.
Curiosity about someone's disability often comes from a good place but depending on how it is delivered, it can create awkward or even offensive situations.
This week the dudes struggle with how to react in these awkward situations.
It's good for someone to ask questions but there is a line somewhere. Listen for real life stories and honest conversation.
In the opening episode of Season 4, Sean and Kyle admit to being a little lazy lately and then commit to getting back on the wagon. That's the power of accountability. And it's the power of their commitment to their listeners - one insightful episode per week for the next 4 months!
The main idea of the episode is all about how we tend to define ourselves and each other by the immediate circumstances. The Dudes postulate that perhaps we should be defined by the entirety of what we do rather than one or two things.
Let them know what YOU think:
instagram.com/2ddpodasttwitter.com/2ddpodcastfacebook.com/twodisableddudes
In the opening episode of Season 4, Sean and Kyle admit to being a little lazy lately and then commit to getting back on the wagon. That's the power of accountability! And it's the power of their commitment to their listeners - one insightful episode per week for the next 4 months!
The meat of the episode is all about how we tend to define ourselves and each other by the immediate circumstances. The Dudes postulate that perhaps we should be defined by the entirety of what we do rather than one or two things.
Let them know what YOU think:
instagram.com/2ddpodast
twitter.com/2ddpodcast
facebook.com/twodisableddudes
Why do we all react differently to a situation - especially when the stakes are high, such as the current situation with Coronavirus? Sean and Kyle have a few thoughts to share but first we must hear about Sean's recent cluster at physical therapy, and Kyle explains how it is possible to lock yourself out of your own bathroom.
Season 4 starts in August but there are 111 other episodes to enjoy so check them out. We hope you have a great summer!
Why do we all react differently to a situation - especially when the stakes are high, such as the current situation with Coronavirus? Sean and Kyle have a few thoughts to share but first we must hear about Sean's recent cluster at physical therapy, and Kyle explains how it is possible to lock yourself out of your own bathroom.
Season 4 starts in August but there are 111 other episodes to enjoy so check them out. We hope you have a great summer!
We’ve had the privilege to work with Amicus Therapeutics on multiple occasions and each time we are moved by their commitment and consistent execution of their corporate mission. This virtual patient panel they facilitated is no exception!
Three weeks into the company’s work-from-home arrangements due to COVID-19, Amicus wanted to continue connecting their team members with each other and the patient communities they work on behalf of.
We were honored to moderate the conversation between Naomi (from the UK), Mike (from New Jersey) and David & Karen (from Arizona) for the global Amicus team and their families.
The panelists helped us laugh, encouraged our resilience and inspired us to maximize our time as we embrace the rare disease journey and cope in times of uncertainty.
Listen to our previous patient panel with Amicus here: Be Yourself - LIVE with Amicus
We’ve had the privilege to work with Amicus Therapeutics on multiple occasions and each time we are moved by their commitment and consistent execution of their corporate mission. This virtual patient panel they facilitated is no exception!
Three weeks into the company’s work-from-home arrangements due to COVID-19, Amicus wanted to continue connecting their team members with each other and the patient communities they work on behalf of.
We were honored to moderate the conversation between Naomi (from the UK), Mike (from New Jersey) and David & Karen (from Arizona) for the global Amicus team and their families.
The panelists helped us laugh, encouraged our resilience and inspired us to maximize our time as we embrace the rare disease journey and cope in times of uncertainty.
After a brave fight, Taylor Kane lost her Dad to a rare disease called Adrenoleukodystrophy (ALD) when she was 3 years old. She subsequently found out that she was a carrier of this X-linked disease.
For a long time everyone believed that "carriers don't get symptoms." However, that myth has been busted and Taylor Kane has a clear mission in life. She started a non-profit called Remember the Girls that builds support and community for carriers of X-linked diseases. What is X-linked? The Dudes had the same question and you'll have to listen to find out.
As much as anything in life, Taylor Kane loves to connect with other young carriers of Rare Diseases because connecting with someone who truly understands you is "like no other." You can connect with her by reading her book Rare Like Us, and you can find her an Remember the Girls on social media.
Remember the Girls:Web: https://www.rememberthegirls.org/Facebook: https://www.facebook.com/remembergirls Twitter: https://twitter.com/remember_girls Instagram: https://www.instagram.com/rememberthegirls/
Taylor:Website: https://www.taylorkane.com/Twitter: https://twitter.com/taylorkane23Instagram: https://www.instagram.com/taylorkane23/LinkedIn: https://www.linkedin.com/in/taylorckane/
Check out Taylor's favorite previous episode: https://twodisableddudes.com/lipodystrophy-the-pharma-patient-relationship-andra-stratton/
After a brave fight, Taylor Kane lost her Dad to a rare disease called Adrenoleukodystrophy (ALD) when she was 3 years old. She subsequently found out that she was a carrier of this X-linked disease.
For a long time it was believed that "carriers don't get symptoms." However, that myth has been busted and Taylor Kane has a clear mission in life. She started a non-profit called Remember the Girls that builds support and community for carriers of X-linked diseases. What is X-linked? The Dudes had the same question and you'll have to listen to find out.
As much as anything in life, Taylor Kane loves to connect with other young carriers of Rare Diseases because connecting with someone who truly understands you is "like no other." You can connect with her by reading her book Rare Like Us, and you can find her an Remember the Girls on social media at:
Remember the Girls:
Web: https://www.rememberthegirls.org/
Facebook: https://www.facebook.com/remembergirls Twitter: https://twitter.com/remember_girls Instagram: https://www.instagram.com/rememberthegirls/
Taylor
Website: https://www.taylorkane.com/
Twitter: https://twitter.com/taylorkane23
Instagram: https://www.instagram.com/taylorkane23/
LinkedIn: https://www.linkedin.com/in/taylorckane/
Hawken Miller is an accomplished young journalist with a clear purpose in life. He is an incredible representative for the Duchenne Muscular Dystrophy Community and he has a passion for the work of CureDuchenne.
Writing is his chosen medium and he has a keen interest in the e-sports world. He uses video games to connect with others in the Duchenne Community and he uses writing to explain video games to the every day person. Hawken is a recent graduate of USC and his journalism experience includes Annenberg Media, The Sacramento Bee, KTLA, The Washington Post, and Bio News Services.
Visit Hawken's website: http://hawkenmiller.com
Find his gaming stream on Twitch: twitch.tv/hawk_wars
Read his most recent columns: https://musculardystrophynews.com/category/hawks-eye-view-a-column-by-hawken-miller/
And find out about the work of CureDuchenne: https://www.cureduchenne.org/
Hawken Miller is an accomplished young writer with a clear purpose in life. He is an incredible representative for the Duchenne Muscular Dystrophy Community and he has a passion for the work of CureDuchenne.
Writing is his chosen medium and he has a keen interest in the e-sports world. He uses video games to connect with others in the Duchenne Community and he uses writing to explain video games to the every day person. Hawken is a recent graduate of USC and his journalism experience includes The Sacramento Bee, KTLA, The Washington Post, and Bio News Services.
Visit Hawken's website: http://hawkenmiller.com
Read his most recent columns: https://musculardystrophynews.com/category/hawks-eye-view-a-column-by-hawken-miller/
And find out about the work of CureDuchenne: https://www.cureduchenne.org/
As everyday life continues to be dominated by coronavirus quarantine, The Dudes discuss the pros and cons of the situation. - they prognosticate about how things might change because of this pandemic. Tune in and play along with the thought experiment.
As everyday life continues to be dominated by coronavirus Quarantine, The Dudes discuss the pros and cons of the situation. They prognosticate about how things might change because of this pandemic. Tune in and play along with the thought experiment.
James Valentine's mission in life is to help people lead healthier, happier lives. He started learning his craft when he worked for the US Food and Drug Administration (FDA) where he played a big role in developing the Patient Focused Drug Development Program. James now works as an attorney in Washington DC where he helps pharmaceutical companies and advocacy groups navigate the path toward approved therapies - which has become more involved in the age of Coronavirus. Listen for insights.
Connect with James on LinkedIn: https://www.linkedin.com/in/jamesevalentine/
Or email him at: jvalentine@hpm.com
Gabe Adams was born without arms or legs due to HanHart Syndrome. He joins us and shares so much about being "different" from other kids, finding his independence, dating, his upbringing in the Mormon-Christian church and so much more.
Gabe is no stranger to people pointing, staring or talking negatively in extreme and cruel ways. Still, he has defined and recognizes his own value and has built a platform to inspire and encourage others. Don't miss this interview!
https://youtu.be/Ur8_IUldv-I
Gabe Adams was born without arms or legs due to HanHart Syndrome. He joins us and shares so much about being "different" from other kids, finding his independence, dating, his upbringing in the Mormon-Christian church and so much more.
Gabe is no stranger to people pointing, staring or talking negatively in extreme and cruel ways. Still, he has defined and recognizes his own value and has built a platform to inspire and encourage others. Don't miss this interview!
Sometimes frustrations get the better of us. And in quarantine, we are all on edge a little more than usual. In this episode, the dudes put their focused conversation aside for a bit to vent.
However they get back on track in the end with their Thank You Notes. Enjoy :-)
Sometimes frustrations get the better of us. And in quarantine, we are all on edge a little more than usual. In this episode, the dudes put their focused conversation aside for a bit to vent a few frustrations and ramble aimlessly. Enjoy :-)
Jason Levy was working in Silicon Valley and living what he thought was a dream life when multiple accidents caused severe Traumatic Brain Injury. Many things changed including physical abilities, income, relationships. His whole life changed and he found himself in much different circumstances than he had envisioned for his life.
Through his struggles, he realized that he must let go of the old Jason and embrace the new one. Once he realized this, he started to build a satisfying life on his new path.
Join us to learn lessons that anyone can apply to their own situation.
If you are inspired by Jason's story of survival, you'll find value in Episode 052: Surviving Sepsis Unshattered with Carol Decker
Jason Levy was a well-paid Silicon Valley executive when multiple accidents caused severe Traumatic Brain Injury. His whole life changed and he found himself in much different circumstances than he had envisioned for his life.
Through his struggles, Jason realized that he must let go of the old Jason and embrace the new one. Once he realized this, he started to build a satisfying life on his new path.
Join us to learn lessons that anyone can apply to their own situation.
Beth Kolbe was injured in a car accident and lost the use of her lower body. Subsequently she went to Harvard, swam in the paralympics, received a law degree from Stanford, practices healthcare law in Washington DC, married the love of her life, and gives back to the disability community through pro-bono work. She's kind of a big deal - listen to hear her perspective.
You may remember that we interviewed Beth's mom, Cindy Kolbe in episode 79. We spoke to her when her book came out - it's about the car accident and the coping that followed during Beth's recovery. Cindy spent a year promoting her book, speaking at conferences, and connecting with others who struggle with mental health. In this episode we get to catch up with Cindy and hear her perspective on the connections she's made.
Connect with Cindy and find links to buy her book at strugglingwithserendipity.com.
Beth Kolbe was injured in a car accident and lost the use of her lower body. Subsequently she went to Harvard, swam in the paralympics, received a law degree from Stanford, practices healthcare law in Washington DC, and gives back to the disability community through pro-bono work. She's kind of a big deal - listen to hear her perspective.
We encounter decisions constantly. Some are simple with clear answers like "Should I do the dishes today?" but some are complex and consequential like "Should I cancel upcoming travel due to coronavirus?"
The Two Disabled Dudes believe that Life is About How We React. How we think when we are faced with decisions and how we weigh out the potential consequences can have an impact on how we react.
In this episode, the dudes discuss 4 simple tips to help us think about the decisions in our lives:
Remove the emotion from the equation - Many tough decisions in our lives evoke abundant emotion which can often cloud our reasoning. If we can temporarily remove emotion from the situation as we are thinking about the decision, it will help us focus on the facts and make an objective decision.Ask yourself "How does this affect the outcome?" - Sean and Kyle use the example of making the decision to sit down in a wheelchair or purchase an adaptive van. They talk about the face that these decisions do not change hte goal or the purpose in life, they just change the method we use to get there.Remove finances from the situation - If we think about it, it's clear that there are things in life that are more valuable than money. Sometimes, we need to let our health, time, or relationships win out over financial considerations in our lives. In this episode, Sean suggests that we can change the way we think about a decision by removing finances from the situation. He's not saying that we need to stop thinking about finances all together but if we temporarily remove money from the situation in our mind, it can help us think more clearly about things that may matter more to us. Discuss with close friends and family - This is something our past Guest, Jeremy Cowart talked about. Our friends and family know us best, and when we are thinking about a tough decision it is valuable to talk with them about so we can solidify our thinking in our own heads, and get a third party perspective who might be able to provide sound advice.
This is only a taste of the conversation. Listen to this episode and see if you can relate - and then leave a comment below with your techniques for confronting the decisions in your life.
We encounter decisions constantly. Some are simple with clear answers like "Should I do the dishes today?" but some are complex and consequential like "Should I cancel upcoming travel due to coronavirus?".
The Two Disabled Dudes believe that Life is about How We React. How we think when we are faced with decisions and how we weigh out the potential consequences can have an impact on how we react.
In this episode, the dudes discuss 4 simple tips to help us think about the decisions in our lives:
- Remove the emotion from the equation - Many tough decisions in our lives evoke abundant emotion which can often cloud our reasoning. If we can temporarily remove emotion from the situation as we are thinking about the decision, it will help us focus on the facts and make an objective decision.
- Ask yourself "How does this affect the outcome?" - Sean and Kyle use the example of making the decision to sit down in a wheelchair or purchase an adaptive van. They talk about the face that these decisions do not change hte goal or the purpose in life, they just change the method we use to get there.
- Remove finances from the situation - If we think about it, it's clear that there are things in life that are more valuable than money. Sometimes, we need to let our health, time, or relationships win out over financial considerations in our lives. In this episode, Sean suggests that we can change the way we think about a decision by removing finances from the situation. He's not saying that we need to stop thinking about finances all together but if we temporarily remove money from the situation in our mind, it can help us think more clearly about things that may matter more to us.
- Discuss with close friends and family - This is something our past Guest, Jeremy Cowart talked about. Our friends and family know us best, and when we are thinking about a tough decision it is valuable to talk with them about so we can solidify our thinking in our own heads, and get a third party perspective who might be able to provide sound advice.
This is only a taste of the conversation. Listen to this episode and see if you can relate - and then leave a comment below with your techniques for confronting the decisions in your life.
Cookies 4 Cures bakes cookies to fund research into rare childhood diseases.
Dana's love for her friends launched her into a mission to help all kids who are affected by rare disease. Listen to this episode to find out what happened.
Connect with Cookies 4 Cures:
Instagram: https://www.instagram.com/cookies4cures_kids/
Facebook: https://www.facebook.com/Cookies4Cures
Twitter: https://twitter.com/cookies4cures
Support the latest project - Cookies4SMA: https://www.gofundme.com/f/cookies4sma
Jeremy Cowart was named the “Most Influential Photographer on the Internet” by Huffington Post, Forbes and Yahoo in 2014. He is an award-winning photographer, artist, and entrepreneur whose mission in life is to "explore the intersection of creativity and empathy." Jeremy has published four books and is a sought-after speaker, having presented at TEDx, the United Nations, and creative conferences across the country.
Listen to this episode to win a copy of Jeremy's book!
His latest endeavor is The Purpose Hotel, a planned global for-profit hotel chain designed to fuel the work of not-for-profit organizations. He’s the founder of a global photography movement, Help-Portrait, a mobile social networking app called OKDOTHIS, and an online teaching platform, See University. He lives in Nashville, TN, with his wife and four children, two of whom they recently adopted from Haiti.
Connect with Jeremy:
Web: jeremycowart.com
Twitter: twitter.com/jeremycowart
Instagram: Instagram.com/jeremycowart
I'm Possible Book: possiblebook.com
Find out how the scarcity mindset can limit your thinking.
John Maxwell on the scarcity mindset: https://www.success.com/john-c-maxwell-6-tips-to-develop-and-model-an-abundance-mindset/
Find out how the scarcity mindset can limit your thinking.
John Maxwell on the scarcity mindset: https://www.success.com/john-c-maxwell-6-tips-to-develop-and-model-an-abundance-mindset/
Andra Stratton was diagnosed with a rare disease called Lipodystrophy that makes her look very athletic and fit due to her lack of adipose tissue. Appearance is deceiving in this case because Lipodystrophy often causes organ failure and sudden death.
The diagnosis was tough but when Andra met others living with Lipodystrophy she felt at home and never looked back. She soon found the greater rare disease community and has become a leader in Lipodystrophy and in the rare disease community.
Andra was recently nominated for a patient advocacy award and invited Kyle to go with her to the awards dinner. They had a "unique experience to say the least.
The Pharma industry has made progress in their focus on the patient but we all have a long way to go. Listen to find out why...
Connect with Andra on Twitter: https://twitter.com/livinlavidalopo
Connect with Andra on Linkedin: https://www.linkedin.com/in/andrastratton/
Lipodystrophy United: http://www.lipodystrophyunited.org/
Listen to the Rare in Common Podcast: rareincommon.com
Andra Stratton was diagnosed with a rare disease called Lipodystrophy that makes her look very athletic and fit due to her lack of adipose tissue. Appearance is deceiving in this case because Lipodystrophy often causes organ failure and sudden death.
We are often surprised by the twists and turns of life - especially when confronted with disability or a rare disease like Ehlers-Danlos Syndrome (EDS).
Lara Bloom was surprised when she was diagnosed with Ehlers-Danlos Syndrome - a disease that causes complications with her connective tissue. She was even more surprised to meet a man who helped her find her purpose - launching The Ehlers-Danlos Society.
Lara is president and CEO of The Ehlers Danlos Society and she is a global leader in the rare disease community.
Lara has taken life's twists and surprises and turned them into a beautiful life of service to others.
Join us for laughter, and a conversation about what it means to build and sustain a life of advocacy.
Lara's Documentary about her participation in the London Marathon: Issues With My Tissues.
Connect with Lara: https://www.larabloom.com/
If you liked this episode you might like to hear from another Rare Disease leader - 006 - Nicole Boice.
We are often surprised by the twists and turns of life - especially when confronted with disability.
Lara Bloom was surprised when she was diagnosed with Ehlers Danlos Syndrome. She was even more surprised to meet a man who helped her find her purpose - launching The Ehlers Danlos Society.
Lara is president and CEO of The Ehlers Danlos Society and she is a global leader in the rare disease community.
Lara has taken life's twists and surprises and turned them into a beautiful life of service to others.
Join us for laughter and a conversation about what it means to build and sustain a life of advocacy.
Welcome back! This is Season 3!
When we get annoyed or mad at others it is important to do a little self-assessment to let the situation teach us how not to act in the future. If someone is doing something you don't like, perhaps it is important to avoid doing that same thing to others.
With a few real-life examples, Sean and Kyle explore this topic in the hopes of improving themselves an giving the listeners (you!) something to think about.
Welcome back! This Season 3!
When we get annoyed or mad at others it is important to do a little self-assessment to let the situation teach us how not to act in the future. If someone is doing something you don't like, perhaps it is important to avoid doing that same thing to others.
With a few real-life examples, Sean and Kyle explore this topic in the hopes of improving themselves an giving the listeners (you!) something to think about.
We are closing out this season with a deep conversation about purpose and commitment and how we reconcile our efforts if we do not quite reach our our goals. We had fun with this one. Enjoy!
This conversation was based on an article Sean wrote for Friedreich's Ataxia News: https://friedreichsataxianews.com/2019/11/05/stubbornness-determination-rehabilitation/
If you enjoy this conversation you might like: 088 - We Must View Adaptive Devices as Tools to Improve our Lives
We are closing out this season with a deep conversation about purpose and commitment and how we reconcile our efforts if we do not quite reach our our goals. We had fun with this one. Enjoy!
Kyle and Sean invent a new game with news headlines and then catch up on their 2019 goals. Also, the two dudes circle back on a conversation from a previous episode about "hidden cities" on flight itineraries.
Kyle and Sean invent a new game with news headlines and then catch up on their 2019 goals. Also, the two dudes circle back on a conversation from a previous episode about "hidden cities" on flight itineraries.
Bumble is not specifically a disability dating website/app, but it worked for Sam and Emily. Sam lives with Friedreich's ataxia (FA) and he uses a wheelchair but they matched, connected, and the rest is history. Listen to this episode to learn their tips and experience for online dating for people with a disability.
Bumble is not specifically a disability dating website/app, but it worked for Sam and Emily. Sam lives with Friedreich's ataxia (FA) and he uses a wheelchair but they matched, connected, and the rest is history. Listen to this episode to learn their tips and experience for online dating for people with a disability.
Before we get to Dr. David Fajgenbaum, Sean shares the grim story about fracturing his hip. If you'd like details about the incident and the prognosis for the future, have a listen.
Then Dr. Fajgenbaum shares his perspective on why humor is important while facing challenges in life. Listen up!
Dr Fajgenbaum's Book: chasingmycure.com
Two earlier episodes with Dr. David Fajgenbaum:091 - Chasing Our Cure019 - Conquering Castleman Disease
First, Sean shares the grim story about fracturing his hip. If you'd like details about the incident and the prognosis for the future, have a listen. Then Dr. Fajgenbaum shares his perspective on why humor is important while facing challenges in life. Listen up!
Dr. David Fajgenbaum has a rare disease called Castleman's Disease which put him on his deathbed 5 times as he was in medical school and earning his MBA. He repurposed a drug to treat himself and is now the world's leading researcher in Castleman's Disease. He is helping other rare disease groups by training them to use his collaborative approach to research. He also just published a book called Chasing My Cure. Please enjoy our conversation with our friend Dr. David Fajgenbaum.
@DavidFajgenbaumhttps://chasingmycure.com/
Dr. David Fajgenbaum has a rare disease called Castleman's Disease which put him on his death bed 5 times as he was in medical school and earning his MBA. He repurposed a drug to treat himself and is now the world's leading researcher in Castleman's Disease. He is now helping other rare disease groups by training them to use his collaborative approach to research. He also just published a book called Chasing My Cure. Please enjoy our conversation with our friend Dr. David Fajgenbaum. @DavidFajgenbaum
We presented the 2DD LIVE forum at the 2019 Global Genes RARE Patient Advocacy Summit. We laughed and cried and had an incredible time connecting with the Rare Disease Community about the patient perspective. Listen to this episode for genuine insight and hearty hilarity from our three panelists:
Onno Faber, founder of RDMDTwitter: twitter.com/onnofaberInstagram: instagram.com/onnofaber
Neena Nizar, founder of The Jansen's FoundationTwitter: twitter.com/neenanizarInstagram: instagram.com/thejansensfoundation
Katie Stevens, Executive Director of Team TelomereTwitter: twitter.com/sixnwsteviesInstagram: instagram.com/sixstevies
If you enjoyed this episode, check out: Be Yourself LIVE at Amicus
Our Odyssey is a nonprofit organization designed to provide support for young adults living with rare and chronic diseases. Listen to learn more from the founders Seth, Kristina, and Anna.
--> ourodyssey.org <--
Our Odyssey is a nonprofit organization designed to provide support for young adults living with rare and chronic diseases. Listen to learn more from the founders Seth, Kristina, and Anna.
Transitions are difficult no matter what your challenges are in life. If your challenges include a progressive neurodegenerative disease, your transitions will probably include mobility devices including walkers, travel wheelchairs, and scooters. In these transitions it is important to see these devices as tools to accomplish the things you want to get out of life.
Transitions are difficult no matter what your challenges are in life. If your challenges include a progressive neurodegenerative disease, your transitions will probably include mobility devices including walkers, wheelchairs, and scooters. In these transitions it is important to see these devices as tools to accomplish the things you want to get out of life.
In August, we joined team de:terminence for an off-road adventure! White Mountain is one of California's highest peaks, reaching over 14,240' in elevation.
Recognized as one of the easiest 14'ers and probably the most bike-able, we called our friends at Catrike and went for a ride.
Listen to find out what happened!
In August, we joined team de:terminence for an off-road adventure! White Mountain is one of California's highest peaks, reaching over 14,240' in elevation.
Recognized as one of the easiest 14'ers and probably the most bike-able, we called our friends at Catrike and went for a ride.
Listen to find out what happened!
Kipp Wesslen was diagnosed with an unknown type of Ataxia and he has become an amazing adaptive athlete. He has learned to fight back against his disease and gain control over his life through adaptive sports. kippitmoving.com
https://youtu.be/tLacel-_-BU
Resources Mentioned in this episode:
Challenged Athlete's Foundation: challengedathletes.org
Adaptive Sports USA: disabledsportsusa.org
IM Able Foundation: imablefoundation.org
Kipp Wesslen was diagnosed with an unknown type of Ataxia and he has become an amazing adaptive athlete. He has learned to fight back against his disease and gain control over his life through adaptive sports.
Kyle and Brent Pease are amazing athletes, period. They support each other and push each other to amazing heights including an official finish at Ironman Kona, the most prestigious finish line in Ironman. Kyle happens to have Cerebral Palsy and they compete as a team. Listen to this episode to hear a shining example of living beyond circumstances.
https://youtu.be/9il60ojggpA
They wrote their story in a book and it's available now:
They work to help others with disabilities compete in endurance sport through the Kyle Pease Foundation. Find out more here: https://www.kylepeasefoundation.org/
All proceeds from their book benefit the foundation.
Kyle and Brent Pease are amazing athletes, period. They support each other and push each other to amazing heights including an official finish at Ironman Kona, the most prestigious finish line in Ironman. Kyle happens to have Cerebral Palsy and they compete as a team. Listen to this episode to hear a shining example of living beyond circumstances.
In this episode, Kyle and Sean talk about how we can stop limiting ourselves by changing our own perception of how others view us. If this sounds convoluted or confusing then have a listen, it just might make sense...
We are stoked to announce that the podcast is now available on PANDORA!
Muffy Ritz completed "the world's toughest bike race" - Race Across America 3 times as a solo competitor. But that's not what she's most proud of. Listen to find out what it is.
The teenage years are some of the toughest years most of us live through. Aside from the typical peer pressures and desires to fit in, imagine facing middle and high school with a rare disease. That’s exactly what these three girls have done or are doing right now.
Meet Caterina, Maya & Annie as we talk about life with a rare disease. From pay phones and boy bands, to navigating school schedules and surgeries, these three girls talked with Kyle & Sean in front of the committed and supportive staff at Amicus Therapeutics. Their authenticity and outlooks on life are inspiring and enriching to anyone who hears them share.
In this episode you’ll be encouraged by their unifying message: Be Yourself!
We are grateful to Amicus Therapeutics for allowing us to be a part of their global-staff conference, held at the Make-A-Wish Wishing Place in Monroe, NJ.
Additionally, we are thankful for and forever touched by the willingness of Caterina, Maya, & Annie to join us on stage for this forum.
This podcast would have never happened if we weren't keeping each other accountable. There are many other examples in our lives where accountability is the key to follow through. Join us as we discuss this and the future of Two Disabled Dudes.
A tragic car accident left Cindy feeling guilty and depressed. Life for her family, especially her teenage daughter, Beth, was thrown into turmoil in an instant and left everyone asking, "what now?"
In this episode we interview Cindy Kolbe, author of Struggling With Serendipity. Cindy tells her very personal story of pain, her struggle with depression and the hope that helped her see the beauty of life, despite tragedy. Hear Cindy's story and learn about her work in this episode!
You'll hear Cindy talk about the powerful storytelling platform of This Is My Brave. You can view Cindy & Beth's story here.
Kyle Attended the Professional Patient Advocates in Life Sciences (PPALS) training a few weeks ago. Immediately following, Sean joined for a screening of The Ataxian to kick off the Great Plains Rare Disease Summit. Join us for this conversation about patient involvement!
Kristin smedley was a new mother with a dream life when she found out her baby was blind due to a rare disease. Then she was dealt a second "dose of blindness" a couple years later when her second son was blind too. All the hopes and dreams she had for her life were crushed.
It took several years but she learned to follow her kids' lead to navigate the world of blindness. And she learned to Set Extraordinary Expectations through her experiences.
Kristin's website: kristinsmedley.com
Kristin's new book Thriving Blind: http://kristinsmedley.com/about/book/
https://youtu.be/Rdar-vklzeE
Elaine Baumstark and Diane Bryant join the dudes to talk about how two pains in the neck turned into two really good looking and extremely intelligent young men.
Seriously, we are grateful for Moms who continue to be wise and supportive influences on our lives. Happy Mothers' Day everyone!
Understanding the science behind your disease, condition, or challenge is intimidating and many times the question is "Why should I? What's the point?" However when we do make the effort to understand, we may find out that it becomes an incredibly important and empowering part of our journey.
The dudes discuss this topic as it relates to them and they try to be smart as always.
In part one of this two part interview, Jeff talked about the challenges OCD brought to his life. In part two (this episode) Jeff talks about how he has used his adversity to create a platform for advocacy for himself and others through "Greater Good Motivation".
Links mentioned in this episode:
Jeff's personal website where you can learn more, follow, and reach out to Jeff: jeffbellonline.comJeff's Non-Profit, The Adversity 2 Advocacy Alliance - an all volunteer 501(c)3 nonprofit organization dedicated to promoting and fostering the power of turning personal challenges into service to others with similar challenges. a2aalliance.orgA repository for inspiring advocate stories: a2astories.orgListener Challenge Leave your 30 second message of hope at projecthopeexchange.com.
I part 1 of this 2 part interview, Jeff joins the dudes to talk about his experience with OCD and how it differs from the common perception of the disorder. In part 2 (Episode 074) Jeff talks about how he turned his challenges into an opportunity to advocate for himself and others.
Jeff Bell is an author, health advocate, and radio news anchor. He is actively involved with the International OCD Foundation, for which he serves as a board member and national spokesman. In 2011, he co-founded the nonprofit A2A Alliance, aiming to showcase and foster the power of turning adversity into advocacy. Bell is a 20-year veteran of broadcast news and currently co-anchors the afternoon news at KCBS Radio in San Francisco. Learn more about Jeff at jeffbellonline.com.
The dudes discuss the difference between a reason and an excuse based on one's own personal principles.
Sean read Kyle's book recently and he had a few questions and discussion points. Additionally Sean and Kyle explore their top three photos of 2019 so far. Check out the photos and listen to the show!
Links to order Kyle's book are at kyleabryant.com
Rob Long was on his way to the NFL until a massive brain tumor completely altered his life.
Rob now serves as the Executive Director of Uplifting Athletes, an organization committed to inspiring the rare disease community through the power of sport. In this episode he shares his personal story and the work of Uplifting Athletes.
Sean also talks about his traumatic encounter with a scutigera coleoptrata. (We had to look that up).
Click here for video interview referenced in episode.
Kyle's first experience as an Uber driver. And the dudes discuss 3 things each that make their lives better.
James Miller is a licensed psychotherapist and the executive producer and host of the nationally broadcasted and syndicated radio show: James Miller Lifeology. James has been in the mental health field for over 22 years.
After 13 years in private practice James left his successful practice in the Washington, DC area to follow his own dreams. He created James Miller Lifeology where he globally helps people simplify and transform their spirit, mind, and body. http://jamesmillerlifeology.com
Kyle's episode on James Miller Lifeology: https://www.jamesmillerlifeology.com/switching-into-high-gear/
Glenn Hartrick has been an amazing athlete for a long time, setting records as an able bodied triathlete. He was hit by a car during a training ride and was immediately paralyzed. He is now an Ironman para triathlete. His addiction to endurance knows no bounds.
Kyle starts off with a story about a crash on his trike and then states his intent to become an Uber driver.
However this episode is really about Mike De Rosa and his friend Ed Brand as they prepare for the commemorative Bataan Death March to raise awareness and funds for the National Ataxia Foundation.
https://youtu.be/cTWcojCpmqM
Donate to their effort here: https://bit.ly/2UiCaAz
This started as a simple conversation about the definition of a Hero and a Mentor, but it evolved into a deeper discussion about character and integrity...
Hasan Banks grew up in Harlem and was diagnosed with a rare disease called SCA7 that affects his balance, coordination, eyesight, speech and swallowing among other things. He is known as Mr. No Excuses because of his work ethic in bodybuilding and his amazing outlook on self-love and life.
Kyle: "Sean wants a six pack, how does he accomplish that"?
Hasan: "Your six pack is in your fridge. You gotta stop eating hamburgers."
Instagram: @MrNoExcuses_
Facebook: @HasanBanks
We all get annoyed at lots of things in life. Laughing about these things can put our circumstances in perspective.
Gabriel Cordell was paralyzed due to a car accident. He became the first person to push his everyday wheelchair across the entire USA. gabrielcordell.com.
Check out the documentary on NETFLIX.
Getting started is the hardest part. Even if you get started down the wrong path you can start over or correct your direction. Either way, you're still farther than if you didn't do anything.
Join the Dudes as they explore this topic and read more thoughts from Sean in his blog post: http://seanbaumstark.com/more-than-a-slogan/
And don't forget to preorder Kyle's book.
It comes out February 26. Preorder at:
Amazon: https://goo.gl/mQD1DiBarnes and Noble: https://goo.gl/2b6iMoBooks a Million: https://goo.gl/D3TpkUIndiebound: https://goo.gl/iLxHDkOr ask them to order it at your local bookstore.
https://youtu.be/ZXsQAXx_ao0
Listener email! Maria Sobotka reached out to us via Facebook (facebook.com/twodisableddudes) and she cut straight to the chase, asking four direct and specific questions:
What does having disability mean to you?Do you even feel disabled?Are you ashamed or proud of being disabled?Has having FA changed your view about disability?
We tackle these questions and share a few resources that have helped developed our own perspectives.
One thing we mention is a TEDx talk we’ve both enjoyed in the past, but we couldn’t remember the speaker or the title at the time of the recording! So, Stella Young is who we refer to and her hilarious and insightful talk can be seen here: https://www.youtube.com/watch?v=8K9Gg164Bsw
Another thing we talked about is #DontForgetTheCrew. More info here: dontforgetthecrew.com.
The title is pretty self explanatory.
One of our goals for the year may be to publish weekly episodes rather than biweekly. So, we would love to hear from more of our listeners. What do you think about this change? Please reach out to us @2DDPodcast on social media and let us know what you think!
In this episode, we go through a quick wish list of 5 guests we’d love to have on the podcast, because the difference between a wish and a goal is writing it down, planning for it, and being held accountable.
As for our personal goals, Sean wants to ramp up his personal reading- he set a goal to read 12 books last year; his goal this year is 20 books.
Speaking of books, Kyle's book is about to be released! Pre-order it here from Amazon. His goal is to get it in the hands of as many people as possible. Sean said that he should have a more quantifiable goal than that. Kyle agreed and then said that he would like 30,000 people to read his book. But he admits that he has no idea what a realistic number is for that.
We want to hear from you oh, dear listener. What are your plans for 2019 and can we help you in any way to accomplish them? Let us know by hitting us up on social media. And again we want to wish everyone a Happy start to 2019.
We on the 2 Disabled Dudes team want to wish everyone a Happy New Year! We are excited to be able to give you this episode, our 58th! (to quote Kyle, “Holy cow! I love it!”) We know that we owe a tremendous thank you to you, our listeners, for allowing us to keep going. Without you, this podcast wouldn’t exist! We reflect on what stands out to us in producing this podcast over the past year…
Kyle, eager to share his thoughts first, reflects on the two-part episodes that we produced for the first time this year. Releasing two episodes on one day was a new action for us, and it has had very positive results.
Sean remembers the time that he and Kyle met in Denver for a few days on the unofficial Two Disabled Dudes retreat. It was a great time to hang out and discuss the future of the podcast.
We also want to call attention to the Two Disabled Dudes store. We were excited to release that this year and provide merch to our listeners!
Special thanks this year goes out to Jake Tompkins, our audio producer, and Matt Lafleur who wrote all of this except these very words because he is too humble. We couldn’t do this without you guys and all of your hard work!
We also give our personal reflections on 2018. Kyle reflects on his work with the Friedreich’s Ataxia Research Alliance, especially with rideATAXIA, his program that raised over $1 million this year. Special thanks to Jamie Young!
Sean reflects on the couple of days the Dudes were able to spend at Reata Pharmaceuticals - just one of the partners in moving the research needle forward.
Sean's personal subjects aren’t exciting enough to mention here :-)
We looking forward to being in your ears next year in 2019!
Online, Sarah Dodd is known as the “nomadic dreamer” -- a “nomad,” meaning that she doesn’t really have a physical home, and a “dreamer” setting her sights on ever higher goals. Her story echoes living urgently, a theme of our podcast.
Sarah is not affiliated with disability, but she comes from a family where addiction was common. Her circumstances seemed to be dictating her life as she felt predisposed to this lifestyle. School, then college, then marriage, then kids, then turn 21. Sarah wanted to expand her horizons. She wants to burn the picket fences her she longed for as a child.
“We can create the life we want. It’s not about genetics. Our future is up to us.”
We want to thank Sarah for taking the time to talk to us about living your own adventure. We wish her luck as she seeks to travel to 196 separate countries! We look forward to interviewing her again. Please check out her website at http://www.nomadicdreamer.com/ and follow her on all social platforms @NomadicDreamer
At the end of October we visited Australia for the first rideATAXIA Australia. We were also invited to present our story at the 13th Annual fara Australia Friedreich's Ataxia Symposium. The audience was filled with FA families and researchers, and we had fun poking fun at some friends and sharing with the attendees.
At the end of October we visited Australia for the first rideATAXIA Australia. We were also invited to present our story at the 13th Annual fara Australia Friedreich's Ataxia Symposium. The audience was filled with FA families and researchers, and we had fun poking fun at some friends and sharing with the attendees. The second half of the session featured a few specific questions for the researchers. Living beyond your circumstances often means learning as much as you can about your situation so you are well equipped to be your best and fight back. Listen as we learn more about where're we're at in the journey to Cure FA.
FARA scientists Dr. Bronya Keats, Dr. Rob Wilson, and Dr. Martin Delatycki joined by FARA President Ron Bartek and Executive Director Jen Farmer
Sometimes the scariest aspect of life with a degenerative disorder is transitioning, whether it’s to a wheelchair/walker/cane, driving with hand-controls or giving up driving altogether, or giving up some of our independence in any form. But we try in our podcast to live life urgently, and sometimes that involves facing the elements of our life that aren’t always fun to talk about.
It’s important for us to acknowledge that transitions look different for each individual person. We both still have a lot of independence -- Sean still walks, and Kyle, in a wheelchair, lives on his own. We hope that talking honestly about the life transitions we face can give some insight and encouragement to others, no matter how different your circumstances may be.
We talk about the sobering realization and the newfound freedom of accepting assistance, whatever assistive devices or people we may turn to. We talk also about the other side of the decision -- of the benefits of resolute trying to do tasks on your own.
What we believe is that it’s up to every person to decide when and how to make life transitions. And what we’ve discovered is that, though the decision of personal life transition is a huge deal for each of us personally, who we are and what we mean to others does not depend upon whether or not we use assistive devices.
Travis Flores is a philanthropist and award-winning author. We are lucky enough to know Travis through our mutual friend Shira Strongin from Sick Chicks, featured in episode 045.
Travis talks about how he first encountered the disability community when he was eight-years-old, when he first entered the hospital. He was diagnosed as having cystic fibrosis, but at that point, he seemed very healthy. He had trouble relating to other kids in the hospital with various forms of disability, so he did not make any meaningful connection with anyone in the community of people with disabilities.
Travis left the hospital and continued living the same life as before, but with the spectre of disability quietly haunting him. His personal recognition of what his CF diagnosis meant for him really struck him in his teenage years. By age 16, he had written a book about his journey with CF, and went on a book tour. He graduated from high school that same year, and got an undergraduate and graduate degree by the time he was 22. He felt a drive to accomplish as much as he could as soon as he could, since his future with the CF diagnosis was uncertain.
However, he realized that his personal achievements, though huge and important, weren’t the totality of life. Only when he was away at college and had just split up with his long-term girlfriend, did the barely-there spectre become an unmistakable bloated monster. He couldn’t hide from his disability any longer. He felt trapped. He realized that he was alone.
Travis found that in addition to his personal accomplishments, a way to fulfill the loneliness he felt was to jump headfirst into the disabled community, a group of people he spent his early teenage years trying to avoid. A big way he did that was by becoming a philanthropist, raising money for organizations such as the Make-A-Wish Foundation, the CF Foundation, and many others.
Thank you for joining us, Travis Flores! Check out his book, The Spider Who Never Gave Up! And his latest venture, a TV series called Sorta Supportive.
We are in Australia right now, connecting with the amazing FA community over here and showing our support for the first Australian rideATAXIA event. We're having a blast and eating more than a few shrimps on the barbie. We're excited to release Episode 053 while we are gone, all about nutrition with our friends Dr. McCormack and Donna. Be sure to check it out!
G'day from Melbourne, mates!
A theme for both this podcast and our lives is to live with urgency; to not be held back by whatever circumstances we find ourselves in.
Nobody brings that to life more clearly than our guest this week, Carol Decker. During Carol’s second pregnancy, she was affected by sepsis, a blood infection. She had her baby seven weeks early as a result, and also lost both of her hands, most of her left leg, her eyesight, and she required skin grafts. Carol talks about how no matter what disability we face in each of our lives, we have to realize that we are still valued and needed. She herself came to realize this the first time she fed her young daughter; who didn’t understand anything about her mom’s disabilities, but still needed her mom.
She was also reminded of her own value when her therapist told her that today they would make cookies with her daughters. Carol didn’t think she could do that because of her injuries, but that experience was a precious bonding time between her and her daughters.
We want to thank Carol for joining us. You can find out more about Carol at https://www.caroljdecker.com/ and check out her book, Unshattered, here.
Sometimes living beyond your circumstances means spreading the word and reaching out to others; building a following of people to get behind your cause, or idea. Often times that means tapping into media and learning how to make it work for you. Heather Burgett has 20 years of experience in PR. She started her career in tech on the east coast and then moved to LA to pursue an interest in doing PR in Hollywood.
Heather started the Burgett Group PR agency when she was only 28. She has worked with authors, billionaires, celebrities, entrepreneurs, experts, philanthropists, rockstars, small business owners, top brands and movies such as The Ataxian! Her mission is to help people get their special talents and gifts into the world in front of a mainstream audience.
Heather has an exciting program in which she will teach you to leverage your unique genius in the media. Check it out at PRstars.net.
Who is Kyle Bryant? This episode answers that question.
It’s hard to believe we’re on our 50th episode! It’s really an honor to do this and it’s all thanks to you, our listeners. We are releasing this episode in two parts- one in which Kyle interviews Sean; and the other Sean interviews Kyle. Both of these episodes will allow you to get to know us a little better. This is our small gift to you, our listeners. We get real. We get personal. We want you to get to know us better, not just as two guys with FA, but as two Dudes!
Who is Sean Baumstark? This episode answers that question.
It’s hard to believe we’re on our 50th episode! It’s really an honor to do this and it’s all thanks to you, our listeners. We are releasing this episode in two parts- one in which Kyle interviews Sean; and the other Sean interviews Kyle. Both of these episodes will allow you to get to know us a little better. This is our small gift to you, our listeners. We get real. We get personal. We want you to get to know us better, not just as two guys with FA, but as two Dudes!
In this episode, we are not interviewing a circus act, like Kyle thought. After an update from Sean on how the first hike to conquer the 14 tallest mountains in California went (more info here), we are excited to interview two guests representing the organization Miracle Flights.
We talk to Mark Brown, CEO, who tells us about Miracle Flights and the 700 monthly flights it facilitates for families. For 33 years now, their service has provided children facing any sort of illness, the resources to fly for the purpose of medical help, when necessary. Sometimes, the doctor they need to visit is far away, and neither the child nor their families have the means to get there. Miracle Flights exists to help in these situations. Although there are general eligibility requirements, Mark tells us they understand extenuating circumstances and do everything they can to help folks on a case-by-case basis when possible. Mark encourages everyone to explore their service by submitting an application online or simply calling 800-359-1711 to discuss eligibility.
Our other guest, Levi Krystosek, is known as @GoLittleLevi on Instagram. As we discovered, this twelve-year-old has the biggest personality ever! His zest and love for life are contagious. He was born with a rare form of dwarfism, Jansen's Metaphyseal Chondrodysplasia and was the patient traveling with Miracle Flights as they hit their 100,000 miles donated! Levi steals the show with his bright personality, and may be Sean's new co-host from now on. (#TeamSean #KyleWho?)
To join Mark & Levi at their annual golf social and fundraiser in Las Vegas on September 27, 2018, Swings For Wings, please click here for more info.
This week we are joined by former screenwriter/actor, founder of KIF1A.org, and 2018 Rare Champion of Hope Honoree, Luke Rosen, who talks to us about the “We Need a Mouse” campaign.
Luke and Kyle met at a rare disease event. When Kyle had their picture taken with his phone, Luke noticed the “2 Disabled Dudes” logo on Kyle’s cell phone case and only then recognized that Kyle was part of this podcast, which Luke listened to regularly! (Please remember to check out our merchandise page, because this shows us that it can help form connections!)
Luke was at that event because his daughter Susanna was diagnosed with a rare disease. When he spoke about his daughter, you can hear him smile even over the audio, as he explains that she is the strongest little girl there is. Of course in character and patience, but literally too: she has ridiculous upper body strength. (Unlike Sean.)
To hear Luke describe his career, he cornered the market as construction worker #1. However, his IMDB page is actually quite impressive, spanning his career. After his daughter’s diagnosis, he took a step back from his acting career, as his focus had changed.
He noticed a recurring and foundational question when it came to asking about researching his daughter’s rare disease. “Is there a mouse model?” Based on the constant dead end of that question, Luke and his wife began the “We Need a Mouse” campaign, which brought up the reality of rare conditions needing more research, by utilizing a cute phrase that has been shared by tens of thousands of people, including children, songwriters, and even puppets.
https://youtu.be/CARSxwtGKvo
https://youtu.be/WjinWaS2lMs
On August 22, Luke and his wife are excited to perform in a play called Love Letters. It’s a Pulitzer Prize winning play which will take place at the Roy and Diana Vagelos Education Center at Columbia University benefiting formance support the treatment program within the Center for Rare Pediatric Genetic Diseases at Columbia University Medical Center --. To find out more and get tickets click here.
Thanks for your leadership, Luke!
Barry Rice is a past recipient of the Ataxian Athlete Initiative and the founder of Cycle Ataxia, a bike ride fundraiser in Ireland benefiting Friedreich's ataxia (FA). Barry joins us from his home in Ireland, where he lives with his wife and two daughters.
Barry tells us about his diagnosis of Friedreich’s ataxia, the same disorder that the Dudes have. He mentions how finally discovering the name of his illness was both disheartening and a sigh of relief. After his diagnosis, he feared for the effects of the genetic disorder on his then-newborn daughter.
Barry on his first trike at the Dublin Marathon.
Cycle Ataxia is an annual bike ride in Ireland, which Barry started. Barry had never ridden (or even seen) a recumbent trike, until he saw a video of Kyle on Youtube. Barry recognized that he could do that, so he bought a secondhand recumbent trike from Ireland’s version of Craigslist. To Barry’s knowledge, he was the first person in Ireland with ataxia to ride a recumbent trike, but at the latest Cycle Ataxia, he counted over a dozen others riding in recumbent trikes.
Presenting a check at rideATAXIA Orlando to support research.
Listen in this episode for more about Cycle Ataxia and to hear more about Barry’s heroic spirit. Also, we find out that the word “ride” means something dirty in Ireland. Who knew?
Check out the Cycle Ataxia website for more info.
No guests this week; just us two dudes, and we want to get some things off of our chest.
First Kyle has some gripes about hotel-accessibility. Anybody has some cheese to go with Kyle’s whine? He should get a stress ball. Kyle shouts about shampoo reachability. And towels too.
It’s easy to dismiss this aggravation as a small deal, a first-world problem. But accessibility is a fundamental issue for people with disabilities; without it, we can’t get around in the world. So even though we joke about it, our frustration is real. Being as independent as possible is a huge deal to us and to all those with disabilities.
Sean talks about the nonprofit that he started, De:terminence, helping people accomplish whatever goal they may have, despite whatever disabilities they may have. They have an upcoming hiking trip up the 14 tallest mountains in California, one at a time, starting this summer. Find out more info and sign up here.
Kyle updates us on the progress of his upcoming book. And the Dudes are headed to rideATAXIA Australia in Melbourne on October 28. Details here: https://fara.org.au/register-ride-ataxia.
Thanks for letting us catch up with you this week!
Shira Strongin lives with multiple physical issues but doctors can't seem to put their fingers on them all. She has some gene mutations that make her one-in-a-million but she's been "undiagnosed" for years. She started a blog, writing under the pen name Sick Chick when she was just 11 years old. So many women and girls related to it that it has now become an international organization called Sick Chicks - a support network of strong, chronically ill and disabled young women who choose to make a positive difference in the world.
Offering a platform for girls to express themselves, a community for girls to connect with others, and structure to empower girls to be active in their schools or cities, The Sick Chicks is helping change lives!
Sick Chicks is hosting its first summit on August 4 at Saddleback College in Mission Viejo, California. The topic will be “Sisterhood and Sexuality.” Fore more info and to purchase tickets, click here.
Francisco Sanchez is a 4th year resident in a Harvard affiliated Emergency Residency program who is about to become the first person to complete residency with a spinal cord injury. He shares his story in hopes that it will connect with others in similar situations. Francisco takes us with him on his journey from a big, 6’2 medical student, who met David Fajgenenbaum (Ep019) at a gym, because he needed a spot. After his injury, he was unable to move most of his body below his chest. In the highly stressful environment of medicine, Francisco could easily have given up on his choice to be a physician. Instead, he defied the odds and chose to persevere, even rigging his wheelchair to make sure not to topple over when he delivered babies. The Two Disabled Dudes are honored that this podcast episode is the first time Francisco is speaking publicly about his injury and experience.
Best of luck in your medical career, Francisco! Your courage and your fortitude are remarkable. You are the embodiment of tenacity!
Nic Novicki is an actor, comedian and producer who has performed on six continents. He is founder and director of the Easterseals Disability Film Challenge which gives filmmakers – with and without disabilities – the opportunity to collaborate and tell unique stories that showcase disability in its many forms and support Easterseals’ goal to change the way the world defines and views disability, so everyone can reach his or her potential.
Nic Novicki photographed by Michael Lewis at the Variety Studios in LA on 1/30/18. - January 30, 2018
Nic's television credits include: Boardwalk Empire, The Sopranos, AXS Gotham Comedy Live, Jack and Triumph, The Neighbors, Austin and Alley, Private Practice and Drop Dead Diva. He has appeared in several movies, such as Life Happens, November Rule, The Last 5 Years, Boston Girls and Breaking Wind and will soon be seen in the upcoming Dead Ant.
Today we talk to a 2016 recipient of the Ataxian Athlete Initiative, Les Ballard. Hailing from a town not many people have heard of in Tennessee, Les brings a much needed southern twang to our podcast with two disabled California yuppies. Les has an unspecified version of ataxia, and rode up to his first rideATAXIA event years ago, on a trike built for a child. (Note: Les is not a child.)
He recounts for us his first attempt at the 50-mile ride at the rideATAXIA, and how a missed turn sent him twenty miles off-course.
Les seems to like riding solo, off the beaten path, because when he received a brand new Catrike Expedition from the Ataxian Athlete Initiative (curefa.org/aai), he took a ride on his own from his hometown in Tennessee across into Georgia.
Catrike Expedition
He recounts for us his fun times on that trip- when he had to sleep outside because there were no motels around,when he came down a mountainand as his feet fell off thepedals, when he had his shoes and his blanket stolen, and many other parts of his trip. But he was determined to finish!
We know: savage, right?
The deadline to apply for this year’s Ataxian Athlete Initiative is June 4. This grant is for anyone with ataxia who wants to improve or begin their cycling adventures. Fill out an application here.
Also, today, Monday May 21, 2018 is a very special day at the 2DD podcast. Today is Sean’s 47th birthday! Happy birthday, Sean! #teamSean #forlife #KyleWho?
CHECK OUT OUR NEW ONLINE STORE AT: twodisableddudes.com/shop
It's time to clean out our heads. So in this episode we cover multiple topics including:
Kyle's recent interview on the Know Ataxia Podcast (https://apple.co/2HTFWy7) Clinical Trials Goals for the year (including today's release of our NEW ONLINE STORE! twodisableddudes.com/shop) #DontForgetTheCrew (dontforgetthecrew.com) Friedreich's ataxia Awareness Day, May 19.
It's a lot in only 40 min. Enjoy!
Arash Bayatmakou is author of the new memoir, Little Big Steps. Arash talks to us about his sudden transition to the world of disability, after a spinal cord injury when he was 30 years old left him paralyzed. He was shocked to discover that medical treatment of spinal injuries hadn’t changed in twenty years. Rather than succumb to the paradigm that the medical field sentenced him to, Arash decided to fight for hope. He defines acceptance as the ability to cope with your life in the present moment, but not being complacent and nodding along when you are told what to expect in the future.
“Be okay with ambiguity.” -Arash
Arash started a nonprofit called No Limits Collaborative, which seeks to help people with spinal disorders pursue activities that they didn’t think was possible.
If you are in the area, please join Arash on Sunday, May 6, 2018, at 7pm, at the Blue Stockings bookstore in New York City for a book signing. Tell him The Dudes sent you.
Check out Arash Bayatmakou’s website at arashrecovery.com for more info on him, his book, and his nonprofit.
Today we are happy to bring to you a conversation we had with Aimee Lyons, Kyle’s Crossfit coach and the owner of CrossFit King of Prussia, Pennsylvania. Aimee talks to us about the importance of functional fitness - a fitness program designed to enhance our ability. This is the root of her goal as a physical trainer, and it’s essential to those of us with physical disabilities. Maintaining our functionality is key to us living longer and healthier lives - as is the case for everyone!
Aimee also talks to us about the importance of nutrition, and Sean brags that a couple years ago he cut vegetables out of his diet and has never been happier. But he was joking. I think.
Thanks to Aimee for building a community devoted to living healthier and for being so passionate in what you do. You’ll see Kyle at your gym soon!
2018 Ataxian Athlete Initiative (AAI)
We are thrilled to announce that applications are now open for the Ataxian Athlete Initiative. AAI was started by Kyle, and is a competitive grant for people with any form of ataxia towards adaptive cycling equipment. The deadline is June 4, 2018. Find more information and begin an application at curefa.org/aai.
We are excited to talk to Ilana Jacqueline - chronic disease patient, advocate and author of the new book Surviving and Thriving with an Invisible Chronic Illness.
Living with invisible chronic conditions can be frustrating and overwhelming - you often have to explain “why” in the face of skepticism and doubt - and that’s in addition to managing your symptoms, treatments and therapies.
Ilana has two autoimmune diagnoses- PIDD and autonomia. If you are unfamiliar with what those are, you are not alone. As she share in this episode, a greatly beneficial action for her is to keep a binder on her at all times, one with the basic requirements she needs, that may not be obvious from looking at her, but may wind up saving her life.
Because after all, she is the expert on living within her body, not the medical professionals.
Another topic she discusses with us is the subject of dating. When do you tell your dating partner that you have a disability?
Ilana hopes that her book is not seen as a depressing story of enduring disability, but a hopeful and humorous take on the subject. And based on our conversation with her, we believe it is!
Check out her book Surviving and Thriving with an Invisible Illness at Amazon or at chronicillnesssurvivor.com and check out more of her writing at Let’s Feel Better blog.
A couple other resources Ilana mentioned:
TV Show: Behind the Mystery of Rare and Genetic Diseases
FDNA Genomics Collaborative: http://www.genomicscollaborative.com/
Invisible Disability Association: https://invisibledisabilities.org/
Ilana's social media:
Instagram: https://www.instagram.com/ilana_jacqueline/
Twitter: https://twitter.com/IlanaJacqueline
Facebook: https://www.facebook.com/LetsFeelBetter/
We are excited to bring you the recording of a live panel following the showing of the film The Ataxian, which is the movie both of us are featured in!
You probably know about the movie by now- it focuses on our team's journey in Race Across America (RAAM), the world's toughest cycling event, trekking 3,000 miles from CA to MD. This movie serves as a vehicle which introduces viewers to the FA (Friedreich’s Ataxia) community.
The documentary screening was the kick-off event for Rare Disease Week on Capitol Hill, a gathering of Americans passionate about the issues facing one in ten Americans, those diagnosed with rare diseases. Each year, the Everylife Foundation arranges a week-long event for participants throughout the country to gather in Washington D.C. and learn about federal legislative issues, meet other advocates and dialogue directly with legislators. This annual event is held around Rare Disease Day, February 28.
Rare Disease Week includes an exhibit by artists with rare diseases, a symposium of current efforts and information about rare diseases, a day spent lobbying Congressional representatives, and a documentary-screening of a rare disease. This year, The Ataxian was shown as the featured documentary.
This episode is a recording of the panel after the movie screened. It is a mash-up of many contributors in attendance of the screening and Q&A discussion! Along with the Two Dudes, on the panel we had Dr. Angel Martin, FARA Research Program Director, and Tom Hamilton, Executive Producer of the film and a 2DD guest on episode 024. We also hear from Ron Bartek, co-founder and President of FARA, who was featured on episodes 009 & 011.
Join us as we dive into the movie and patient advocacy.
The film is available on video platforms now. So if you haven’t seen it yet, click your preferred platform here:
iTunes • Amazon • GooglePlay
We are proud to present the second half of our interviews at Reata Pharmaceuticals, this time it is all about Patient Advocacy and Patient Voice. Today is also the first day of Rare Disease Week, a US initiative sponsored by Rare Advocates, a week for those in the rare disease community to meet with our national Senators and Representatives in DC. Sean and Kyle are here in DC, along with our two behind-the-scenes dudes Jake and Matt, helping to amplify the patient voice! February is global Rare Disease Day!
During our recording at Reata, we had the privilege of talking to Kara Eichelkraut, who is responsible for Patient Advocacy at Reata Pharmaceuticals. Kara tells us a little about her background - how her education and preparation for pharmaceutical work led her to work in a pharmacy. And she hated that job. She then took a position at a pharmaceutical company, Reata. She heard of a 5k for mitochondrial disease and got a group of her fellow employees to participate at it. This was the start of her patient advocacy work - a totally new avenue for work at Reata. She grew to see the enormous value of patient advocacy.
Additionally she recalls her first encounter of Sean, as an awkward creeper at a rideATAXIA event.
Kara and the rest of Reata are getting excited for rideATAXIA Dallas, coming March 24. For more details on that event, click on the link.
We want to thank Reata Pharmaceuticals for allowing us to stop in and have a live podcast there. Thanks to all of our guests. On behalf of the rare disease community, we truly appreciate all of your work!
IMPORTANT NOTE- The movie The Ataxian, starring both Sean and Kyle is finally out on digital video formats today, February 26. Now is your chance to see this inspiring movie. Look for it on any of these platforms - iTunes, Google Play vied, Amazon video, Xbox, or the PlayStation Network. More at theataxianmovie.com.
We’re excited to bring you the first of two episodes about the drug development process we recorded LIVE at Reata Pharmaceuticals headquarters in Irving, TX. In this episode, we talk to Warren Huff, the founder and CEO, and Dr. Collin Meyer, Chief Medical Officer.
In a behind-the-scenes look at a pharmaceutical company, we hear the background stories of both Mr. Huff and Dr. Meyer, as well as the origin of Reata.
One of our guests divulges that he owns a Viper and races cars. Listen to find out which one Sean is jealous of.
We also ask them about a new drug that Reata is developing, called RTA-408. This drug has special interest to us because it is a drug for patients with FA, which both Kyle and Sean have.
For more information on participating in MOXIe, Reata’s study in FA, visit http://www.curefa.org/clinical-trials/clinical-trials-active-enrollment-closed/cohort-9-moxie-phase-2-study-of-rta-408
On Sunday, February 25, the Dudes will be participating in Rare Disease Week, and this kicks off with a screening of the documentary The Ataxian, followed by a Q&A session. This starts at 5:30 at the Naval Heritage Center in Washing DC. If you’re nearby, we’d love to see you! For more info and to register, click here.
When tomorrow is filled with uncertainty, we learn to make the most out of each day.
Katie Stevens begins with the personal story of her son’s diagnosis with Dyskeratosis Congenita (DC), a rare genetic disorder. But she ends with a feeling of hope and confidence.
Katie is the president of Dyskeratosis Congenita Outreach: dcoutreach.org.
Katie tells us about the diagnosis of her son before he was a teenager. Because genetic testing didn’t seem necessary, his DC was diagnosed as bone marrow failure, a key symptom. After her son’s DNA sample was sent for genetic testing in Canada, they finally had the diagnosis of Dyskeratosis Congenita. The resulting issues of this disorder are multisystemic, so until recently most patients died of DC in childhood.
The life of Katie’s family changed after this diagnosis. After connecting with other families with DC, she found the newly formed organization DC Outreach, which both serves to spread awareness and research of this rare disorder, and seeks to build community among those affected by DC.
It is the second part, the community-building, that Katie is most proud of. Previously a stay-at-home mom, now serving as the president of an organization uniting those affected by a rare disorder. The medical and scientific research is a very important part of this organization’s purpose; but learning how to best live, on a day-to-day basis, when whatever problem you face is overwhelming...well, Katie knows how important that is.
If you are looking for a gratitude icon, the dudes try to play the part - they know that gratitude is a big key to living a happy and productive life. Listen to this episode to hear Kyle and Sean's thoughts about putting gratitude in practice. Why Gratitude? Without gratitude, it’s easy for us to focus on our struggles in life. Living with a disability (or any challenge) seems like a great excuse for us to get bogged down by negativity. We may think it's an excuse to brood over how simple tasks can be a lot more difficult or even impossible for us to do on our own.
This difficulty is not something we choose to dwell on and we discourage others from focusing on it, but we have to acknowledge that it exists. Sometimes living in the shadow of frustration is much more crippling than our inabilities. For Example A listener drew our attention to an episode of the Freakonomics podcast, “Why Is My Life So Hard?” This podcast uses the terms “headwinds” to describe the oncoming obstacles in front of you. “Tailwinds,” on the other hand, are the times in our lives when all of our struggle gives us a sense of relief and rest as we move forward. Unfortunately, the moments of tailwinds in our lives are often unnoticed, leaving us only aware of the difficulties. We cannot live with urgency when we only focus on the negative aspects of life. We are at once obligated to respect the struggle, and to look beyond it. And one of the best ways to do that is with gratitude. How To To use gratitude to bust your funk, we’ve come up with 3 simple steps.
Be thankful- Think about it, be aware (acknowledging both the positives and negatives of the state you find yourself in) and reflect on what you are grateful for Write. It. Down. Take action.
We have two ways that’d we’d like you to join us in being a little more grateful in our day-to-day lives.
Don't Forget the Crew is a fun way to actively show appreciation to others in your life. More details in the episode and on the website: dontforgetthecrew.com. 2DD Challenge: One Thank-You card written each day for a month. If you want to join us, please do and let us know on Facebook, Twitter, or Instagram.
Thank you for being on this journey with us! Listen to another amazing gratitude icon in Episode 064: Mr. No Excuses - Hasan Banks. One of the videos Sean mentions in this episode: “Getting stuck in the negatives and how to get unstuck” by Alison Ledgerwood.
This episode features the other half of the 2DD Production Team. We interview Jake Tompkins & Matt LaFleur and talk about what they do and why they do it. This show wouldn't be possible without their help. We record from opposite sides of the country, causing some logistical challenges that these other guys are better at then us (mostly Sean).
Tune in to hear more about Jake and Matt and how this show comes together!
We began this project a year ago, hoping to give a voice to those who choose their own attitudes in the face of challenges that life serves up. So here we are, 30+ episodes later, and the 2 Dudes have come to realize how the podcast is kept alive and strong by the group of people it brings together!
In this, our one year anniversary episode, we focus on the fact that the podcast is held up by you as a listener. And you are the reason why we can’t wait to continue this next year!
In this episode, we interview four of our listeners: Dan Parker-King; Heidi Behr, Nygel Lenz, Tyler Porter, and Mary Nadon Scott.
We ask our guests for their favorite moments and interviews from the show-what keeps them coming back, and we have a few flashbacks from previous episodes (introduced beautifully by a harp, which Sean himself played [this may be a lie]).
The Two Disabled Dudes podcast is a product of everyone coming together, and we are stronger because you are part of our community. From the bottom of our heart, thank you for being a part of this. We look forward to being back with more episodes in 2018!
Dan - Instagram: @beefunit
Favorite episode
024 - Tom Hamilton
Heidi - Instagram: @heidifeelpeacenow Website: feelpeacenow.com
Favorite episodes:
001 - Life Is About How We React 029 - Paul Avery
Nygel - Instagram: @nygellenz
Favorite episode:022 - The Psychology of Disability With Dr. Dan Gottlieb
Tyler - Instagram: @tylerporter72
Favorite episode:
025 - Everyday Leadership With Drew Dudley
Mary - Instagram: @maryfrances_87
Favorite Episode:
004 - Travel Gone Wild - How to conquer anxiety during travel with a disability.
Many of our listeners know that we are approaching our one year anniversary!
In two weeks we are going to feature an episode that includes a few of our loyal listeners plus Jake and Matt, the two behind-th-scenes Dudes that make this show possible.
While we are busy preparing the anniversary episode we are bringing you one of our most listened-to episodes - the very first one, from December 12, 2016. Enjoy!
“It’s a wonderful life; it’s just a different life.”
We interview Paul Avery, CEO of World of Beer; former COO of the parent company of Outback Steakhouse, father of two daughters diagnosed with Friedreich's ataxia (FA); and chair of the board of the Friedreich's Ataxia Research Alliance (FARA).
The transition from being in the business of running successful restaurants to becoming forefront in the research and treatment of a rare disease was a sudden and unexpected change: but not a shift Paul hesitated to make. For him, his love for and concern of the well-being of his daughters, diagnosed with FA, made his decision to join the research and development of a treatment of FA a natural fit.
And in Paul’s willingness lies a lesson for all of us. We ourselves may not have a background in medicine, biology, or genetics. We may get overwhelmed at becoming part of whatever team is calling to us. But at some level, we all have something to contribute.
Paul was able to use his economic and negotiating skills to become a powerful voice in FARA. Not to mention the unbelievable benefits Outback Steakhouse and other companies under his influence have provided at FARA events.
What is your calling in life? Could the fact that your background seems unrelated to that be not a weakness, but a strength?
We want to thank Paul Avery for reminding us that strength and accomplishment comes from everyone bringing their diverse skills to the table.
Also mentioned in this episode:
2DD Challenges: https://twodisableddudes.com/2dd-challenges/ Instagram post by @texassmith: “We won't stand on the outside of our lives, looking in, wondering what it would be like if we had the courage to show up and be seen. We'll stand in front of the walls that tell our stories and show our scars. Those scars are a gift; they say, 'See, I’ve been there, and here I am still standing and you will too.' They become badges of honor, agents of healing. They become who we are.”
We're bringing you a follow-up episode detailing our progress to the challenges we gave each other in a previous episode (026). We are working towards greater self-discipline! Inspired by our conversation with Drew Dudley (025) and the book Living With A Seal by Jesse Itzler, we issued a few challenges to each other and this episode brings an update to our personal performance.
The first challenge we talk about is our 100-pushups-per-day challenge. The 2DD Pushup-up challenge started strong, but both of us have had a couple misses since the beginning, and since this episode recorded! Oops. Although not 100%, we talk about our progress and the discipline this challenge has pulled out of each of us.
The second challenge was to log all the food we eat for a month. We've accomplished the logging, but as you can see here, we still enjoy food, or make poor choices - depends how you look at it! After all, not having that birthday cupcake may have been offensive to some. This has been a great exercise for us and we are happy with the awareness it has increased for each of us.
The last challenge was to come up with a list of five lessons we have learned in our lives.
Sean's List:
You may not be able to choose your circumstances but you are in full control of your response to whatever circumstance you find yourself in. Don't make all of your life decisions based only on money. Every single person has value, and it's our responsibility to find it for ourselves and help identify it for those around us. There are other perspectives to things in life that we should consider. Be present in the moment.
Kyle's List:
Remembering people's names is important! Define your goals in life. Always be on the lookout for the opportunities that are presented to you. Fake it 'til you make it! Fireflies are under appreciated.
Seriously, fireflies? Kyle is strange.
How about you, how do you stay on track with self-discipline? What are five, or just one, life lesson(s) from your experience? We want to hear from you! Comment here or on the 2DD Facebook.
Living with any condition presents challenges for everyone, some common and some unique. No matter our circumstances though, life is what we choose to make it. We are all dealt some cards and everyone chooses how to play the hand they're dealt. In this episode, we talk with a panel of three friends living with Friedreichs Ataxia. Jean, Kate and Michael talk openly in front of a live audience about life with FA. From adapting to high school to playing in the dirt 30 years after a prognosis that barely promised another 10 years of life.
While in Tampa, Florida, leading up to the 2017 FARA Energy Ball, Kyle & Sean hosted a group of friends and family for a live recording to discuss a variety of questions. This panel shares stories from personal experiences about mis-diagnosis, devastating prognosis, their choices to engage in research efforts and their commitment to do whatever it takes on the journey to cure FA!
This episode is a condensed version of the live recording which was captured and available on the 2DD Facebook page as a LIVE video, click here to view.
For more information on FARA and the FARA Energy Ball, please click here.
A special thanks to our panelists Michael Gehr (Oklahoma), Kate Walker (Louisiana) and Jean Walsh (Massachusetts) for sharing so openly. Also, to our Audio Engineer, Jake Tompkins (New York) who worked tirelessly to put the many pieces of a live recording into place to make us all sound good!
Thank you, friends!
In this episode, we get back to the basics. No guest, just 2 Dudes hanging out and talking about a topic very important to us: self-discipline.
Living with a disability is often frustrating. Maybe that’s an understatement. When so many normal daily activities are impossible, or at least difficult, to do independently, we are tempted to develop a victim’s mindset.
But that’s not who we are, and that’s not who you are. The key to unlocking your own greatness is self-discipline.
Sean has a great way of visualizing self-discipline. He imagines that our ideal self asks us if doing whatever we are doing at the moment, helps us advance to where we want to be. An example he uses is if we want to look great for the summer, will eating whatever we’re going to eat or skipping the next workout or going to the gym right now help us get there?
Kyle talks about a great book he recently read called Living with a SEAL. In it, an ordinary man trains with a Navy SEAL for a month, after seeing the SEAL compete in an ultra-marathon. In the harsh cold of winter, the book details the grueling training sessions, mixed in with a lot of laughs. The book serves as a perfect example of what it looks like to behave according to self-discipline.
There are many areas that both of us want to be better in - so as we get close to the one-year anniversary, we invite you to join us in trying to better ourselves!
The first thing we are doing is comprising a list of 5 things each. These are the 5 most important lessons we’ve learned in life. We want to hear yours too! So reach out to us at thedudes@twodisableddudes.com. We look forward to hearing your lessons! We’re also starting the 2DD Push-up Challenge. We (Kyle and Sean) are going to do 100 push-ups everyday for a month. Keep track of our progress here: https://twodisableddudes.com/2dd-challenges/. And feel free to join us! We’re also going to be logging what we eat for the next 30 days. Join us or track our progress here: https://twodisableddudes.com/2dd-challenges/
Self-discipline is all about making your future self proud of the actions you are taking now. So, no time for excuses. Be the best version of yourself right now!
Almost anyone with a disability can tell you that we are often thrust into the spotlight, even though we never asked for that. People with disabilities are too often seen as “brave” or “strong” or “inspiring,” when in reality we are just living.
This is in no way to diminish the struggles of “just living” while overcoming a disability: believe me, we understand that hardship. But to be called “heroic” or “inspiring” just because we have a disability is cheap. It feels like it dismisses us.
We are thrilled to talk to Drew Dudley, a man who’s taken on the challenge of strengthening everyone’s leadership skills. Many people, especially most of us with disabilities, don’t recognize themselves as a leader, and Drew hopes to change that. What defines a leader to him is someone who willingly chooses noble response to whatever he or she faces in life. That choice may seem familiar to the population of those with disabilities: choosing a noble, meaningful reaction to our circumstances is how we get through life!
Drew served as the director of one of Canada’s largest leadership development programs at the University of Toronto for 8 years and then as national chair of a charity supporting the work of Cystic Fibrosis Canada. He has been featured on The Huffington Post, Radio America, Forbes.com, and TED.com, where his TED talk has been voted “one of the 15 most inspirational TED talks of all time.”
Drew talks to us about how people should recognize themselves as leaders, even though they may not see themselves as the picture of an ideal leader in their minds. Leadership is seen in whatever little actions someone takes day-to-day: if you choose to react to something in a positive and an unconventional way, you’ve become extraordinary and exhibited the qualities of a leader.
Drew talks to us about his popular TED Talk and how he almost didn't give it, because he felt that he was “just a teacher” and his story was really simplistic. But his students reminded Drew of what he had taught them: never define yourself with the word “just” because it gives people permission to expect less of you. Drew gave a talk on how his forgettable statement made a lasting impact on someone else. (Fitting.) He encourages us that if we live and behave mindfully and intentionally, we may never know what small action of ours may impact someone else.
Drew is generously giving all listeners of this podcast 50% off of his online leadership courses! To get this awesome deal, visit DrewDudley.com and follow the prompts to enroll, or try the free trial, of Day One Leadership.
We want to thank Drew Dudley for speaking with us and encourage our listeners to begin seeing themselves as leaders and encourage you to grow in that.
Tom Hamilton spent 25 years on Wall Street and when his daughter was diagnosed with Friedreich's ataxia (FA), he started using all his knowledge and expertise to fight Rare Disease. Tom is on the Board of Directors for the Friedreich's Ataxia Research Alliance (FARA), he is a founding Board Member for Chondrial Therapeutics, he is Executive Producer of The Ataxian, and co-founder of the CureFA Foundation.
It’s understandable that most of what we focus on in this podcast is meant to encourage those with disabilities. However, those with disabilities are not the only ones affected by them. In many ways, the effects of the diagnosis are felt severely by the parents of the patient. It’s important to recognize the support of parents of those with disabilities - and their own hardships.
Tom tells us about his journey of discovering his daughter has a rare debilitating disorder when she was nine, and how he felt obligated to use his own abilities to advance research for FA. He admits that he lacks medical or scientific knowledge, and he says that everyone listening may notice that they are lacking in certain areas necessary for research of rare disease. But he encourages everyone to instead focus on your strengths, and use your own talents in the effort to better the lives of people in whatever community is important to you.
Patrick Lawrence is the Senior Programs Manager for the Challenged Athletes Foundation (CAF) and he joins us to talk about CAF and specifically their grant program in order to empower the athlete in all of us!
One of the ways we manage life with a disability is to stay as active as we can. But staying active when you have a disability looks a lot different than it does for able-bodied people. Whether traveling to an accessible location, finding equipment that we can use, or locating a coach ready and able to help us stay active - it becomes more complicated with a disability.
Kyle knows that firsthand, when he realized that a recumbent trike suitable to him was well beyond his price range. He found out about the Challenged Athletes Foundation, an organization that provides grants for people with disabilities. Kyle applied for a grant, and received the money that enabled him to get his Catrike, which enabled him to ride across the US in the Race Across America.
We are happy to bring you this interview with Patrick Lawrence, Senior Programs Manager at CAF. He tells us how he became involved with CAF, and tells us about this company’s mission.
We hope to encourage any of our listeners with disabilities to apply for a grant through CAF. Both Sean and Kyle can attest to the unbelievable medicine that is staying active, despite disability. Do not let the word “Athlete” in the organization’s title intimidate you. Their grants are for people at all levels of activity- whether you are looking for an adaptive machine or a gym membership for the first time or whether you are a trained Paralympic athlete.
We want to thank Patrick for letting us know a little more about the awesome initiatives the Challenged Athletes Foundation accomplishes. We encourage all our listeners to STAY ACTIVE, TAKE INITIATIVE and APPLY!
Keep living with urgency.
Apply here for a CAF grant.
Dan Gottlieb is a practicing psychologist and therapist with more than 40 years of experience. Best known as the host of "Voices in the Family," a weekly radio program heard for more than 30 years on WHYY-FM, Philadelphia’s NPR affiliate. Dan recently retired from the weekly radio program, and now produces and hosts six specials each year.
Our focus this episode is on the often overlooked interior life of those affected with disabilities. We interview Dr. Dan Gottlieb, renowned professional psychologist, author of nationally praised books, and regular contributor to Philadelphia's NPR station.
Kyle first met our guest when Dr. Gottlieb was the keynote speaker at a national conference about FA. Dr. Gottlieb spoke so profoundly and so deeply that we were excited to bring him on as a guest, so that he could share his story and his insights with our community of listeners.
In 1979, he left his wife and two young daughters at home to secretly buy an anniversary gift for his wife. On the highway, a loose tire from an 18-wheeler smashed his car. The resulting wreck ended up sending him to the hospital with a broken neck and into a life of disability.
Totally paralyzed below his clavicle, Dr. Gottlieb shares with us his honest and personal thoughts at the time - that he didn’t want to live; that he thought his existence would only be a burden on his friends and family. This way of thinking is incredibly depressing and defeating - but not unfamiliar for many people facing such devastating circumstances.
He shares with us how he was able to triumph over this mindset - how one of the most refreshing realizations for him was that he, even with all of the tasks he was unable to do with his newly impaired body, was still able to provide value to others. In his case, this reality hit him while he was still in the hospital - a nurse needed someone to listen to her. Dr. Gottlieb realized that even he as a quadriplegic man could still do that.
Related to that idea of remaining focused on what you can still do for others is the second realization Dr. Gottlieb found - that focusing less on himself and his own problems or complaints and more on his surroundings (whether that’s other people, or simply physical surroundings like a room’s architecture) was freeing. It enabled him to leap beyond the threats of depression and hopelessness, and discover purpose and beauty in life, even life with a disability.
Take-aways from this episode:
Be more aware of others. Be the person who holds the Umbrella
We thank Dr. Dan Gottlieb for joining us today and sharing his insights. Check out his website drdangottlieb.com and his books The Wisdom We're Born With: Restoring Our Faith in Ourselves, A Grief Like No Other: Surviving the Violent Death of Someone You Love, Letters to Sam, and Learning from the Heart.
rideATAXIA Europe - Le Peloton de l'Espoir was a 450 mile ride from Strasbourg, France to Lyon, France during July 1-8, 2017. There were 20 riders from the US and 30 riders from France. The purpose of the ride was to bring together the French and US FA communities as one united FA community, moving to the finish line together. Join us as Sean "interviews" Kyle about the ride.
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Join us for a discussion about patient engagement in rare diseases with Horizon Pharma. This is our first recording in front of a live audience!
In college, his friends called him The Beast. But then he got mysteriously sick and was on the brink of death 5 different times, stumping specialists. Diagnosed with Castleman Disease, Dr David Fajgenbaum earned his MD and started research on himself. He formed the Castleman Disease Collaborative Network (CDCN) to speed the progress toward a cure for himself and the entire Castleman Disease Community.
How does anyone keep going, when your body is your own worst enemy?
For David, the answer was in something his late mom would say. During her long battle with cancer, rather than giving up, she would explain to David how important it was to “make your silver lining.”
It’s a cliche to FIND a silver lining through even the darkest of stormclouds, but MAKING your silver lining changes your world. Instead of being a passive observer of life, we become the hero of our story. And instead of barely making it through, we learn that we have to conquer our stormclouds.
Read more about Dr. David Fajgenbaum in The New York Times: https://www.nytimes.com/2017/02/04/business/his-doctors-were-stumped-then-he-took-over.html
CDCN Facebook: https://www.facebook.com/cdcn2
CDCN Twitter: https://twitter.com/CureCastleman
Sometimes being brave is what gets us through. Facing the unknown and facing unknown possibilities down the line is familiar to any of us living with a disability.
Maybe no one understands that better than Rudy Garcia-Tolson, who made the decision to have both of his legs amputated above the knee when he was only five years old.
Born with legs that weren’t able to support him and allow him to function properly, Rudy wanted more than anything to be as active as his brothers and sisters were. When he was faced with the decision of whether or not he wanted to amputate his legs at such a young age, Rudy had such a unique perspective on the choice that his perseverance and wisdom are striking -
“At that point, it was easy for me. I just looked up at my mom and said, “Let’s do it; let’s cut my legs off.”...When I was born, I had chains around my legs...and as soon as I had my legs amputated, they were gone, and I was able to live a full life.” Rudy Garcia-Tolson
After that surgery and being fitted with prosthetic legs, he never stopped being active. He was able to play outside with his siblings and friends. He eventually was able to compete in the Paralympics four times. The first time he competed there, at age 15, he won the gold medal and set a world record time in swimming. He is also a triathlete, having competed in a number of triathlons and IronMan triathlons.
And Rudy is only 28. When we asked him about future plans, he said he plans to compete in the 2020 Paralympics, which will likely be his fifth and final time. He also spoke of his love of motivational speaking, which he hopes to have more time for. He especially enjoys speaking to kids, and showcasing how differences shouldn’t be something to be ashamed of; rather, your differences may be your own unique route to excellence.
The courage to embrace our differences and to use them as fuel to our success is something we are so thankful that Rudy shared with us. Please check out his website at www.rudygarciatolson.com
Sports Illustrated recognized Roger Crawford as "one of the most accomplished physically challenged athletes in the world." As a Hall of Fame speaker and best-selling author Roger teaches us how attitude affects outcomes.
Viktor E. Frankl, a Jewish psychiatrist who was forced into a Nazi concentration camp during World War II, wrote many profound statements on the ability to choose one’s own attitude, even in the harshest situations: “When we are no longer able to change a situation, we are challenged to change ourselves.” “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one's attitude in any given set of circumstances, to choose one's own way.”
Life can seem overwhelming and exhausting at times. It’s easy and even predictable for anyone facing the staggering uphill battle.
Someone who understands that clearly is Roger Crawford.
Roger gives us some incredible insights into changing your perspective on the world. Since he is a world-renowned tennis player, he shows us his perspective when he faces an able-bodied opponent in a tennis match: that he himself is actually the one with the advantage; that his opponent feels pressure not to lose to “this one legged guy with three fingers” as Roger puts it. So Roger’s goal was to keep the ball in play.
Without worrying about others’ reactions, Roger was fully able to focus on doing the best he could.
Of course, disability isn’t easy to completely overlook. Roger shares with us how humor has been a remedy for his own awkward and unknown situations.
We are grateful to have Roger as a guest and are encouraged by his words. He invites anyone listening to connect with him on social media by visiting his website rogercrawford.com, because navigating life with a disability is a complicated task. As someone in that position, Roger offers advice and understanding to all people.
Leading up to rideATAXIA's 8th annual NorCal ride, Kyle was interviewed on a popular local Sacramento show! Hosted by Damien Barling & Jason Ross, Kyle had the opportunity to talk about the ride, The Ataxian, explain Friedreichs Ataxia and even plugged this podcast! In this special cast, we share that live interview with you. Enjoy! For more info on rideATAXIA NorCal, click here!
In this episode we sit down with Dr. Liz Applegate, a nationally-renowned expert on all things related to nutrition. She speaks about her teaching career and a current program that strengthens people’s sharp-mindedness, among other exciting projects she’s working on.
One thing we know all too well in navigating our lives with disability is to treasure what we can do for ourselves. Maybe it has to do with the American ideal, maybe it has to do with remaining as active as we can, but it’s probably just because we are both hard-headed - independence is something we strive for. Since the rare disorder we both have is slowly taking away more and more of our independence, we love learning about things we can do for ourselves. In the world of disability, we are constantly reminded of things we can’t do; so it’s really rejuvenating and especially interesting to us when we learn more about the things we are able to independently, especially when those things can have a big impact on our day-to-day health.
Doctor Liz explains that a specialized diet and nutrition has health benefits for everyone - especially for those with rare disorders.
“Nutrition plays a very important role, especially for people with [rare] conditions… This is important for people to be motivated. [This is] something they can control.”
Eating healthier is a step that those of us championing our own independence can definitely look into!!! And the consequences of eating healthier is a way we can all feel a little better!
And Kyle asks Dr. Liz if it’s a good idea to put butter in his smoothie, as he was fond of doing recently.
Her response?
“...Wow.”
Thanks to Dr. Applegate for joining us and talking to us a little about the importance of good nutrition. It’s a good reminder that in the world of disability, it’s important for us to look past the things we aren’t able to do and focus on the things we can do. One thing we can do is to pay more attention to the things we eat and strive for a healthier diet. That won’t always be easy, but it all starts with choice.
Links:
Dr. A's Bio: http://nutrition.ucdavis.edu/people/faculty/applegate_liz.html UCD Sports Nutrition Twitter: https://twitter.com/fuelingaggies UCD Sports Nutrition Instagram: https://www.instagram.com/fuelingaggies/ UCD Sports Nutrition YouTube: https://www.youtube.com/channel/UCnCcHAlJh8oaYyEWWNCH8fQ Team Davis Website: http://team-davis.org/
You've heard us talk about our 4-man Team, and 13-member Crew in Race Across America (RAAM). In this episode, we chat with the other two cyclists from Team FARA in RAAM; John Lockwood and Mike Mellott.
John & Mike have both been involved and supportive of many adventures throughout the years and they are always fun to reconnect with. As you'll hear, since competing in RAAM 2010, both of these dudes have married and started families of their own.
In this episode we discuss our memories from the trip. The laughs, the difficulties, the inspiration, the time Sean poked himself in the eye and had to go to a hospital, the stress of constantly being filmed, the love shown by others in the FA community, the time Sean needed to eat from Taco Bell in order to carry on.
Ultimately we are so thankful that our friends Mike and John decided to go on this crazy adventure with us. We can’t deny that life with a disability is a scary road. It can seem overwhelming and isolating at times. Finding others who willingly share the journey with us is one of the greatest treasures in life.
Kyle's Dad, Mike Bryant joins us to talk about Team FARA in Race Across America and what it took to get the team safely across the country in "The World's Toughest Bike Race."
And Kyle tells a short story about being held hostage by a cat.
Held hostage by a cat. Hear the story on a new episode out tomorrow! Plus we interview Kyle's Dad about being crew chief for Race Across America. A post shared by Two Disabled Dudes Podcast (@2ddpodcast) on May 7, 2017 at 12:52pm PDT
We never know what we are truly capable of until we find ourselves in a tough situation, when success is the only option.
In January of 2010, Kyle, Sean, and Kyle’s parents attended a crew seminar on the “world’s toughest bike race”, Race Across America (RAAM) - non-stop along a set route across the country. They needed a full team and other riders, training, navigators, bike and trike maintenance, etc. The only motivation they had was a blog post, in which Kyle promised to himself and others that he would participate in the RAAM to raise awareness for FA. Nothing else.
At a restaurant table after the seminar, the four looked at each other blankly. What did we get ourselves into? Instead of getting overwhelmed by the huge challenge ahead of them, the team made its first decision: they made Mike Bryant the crew chief of their team.
In addition to being the first and maybe most vital member of Team FARA in the RAAM, Mike is (un?)fortunate enough to be Kyle’s father. He accompanies his son on almost all of Kyle’s big adventures. Despite the huge step out of his comfort zone, he agreed to tackle this huge new obstacle.
That perseverance, it seems, defines the life of those who face a disability and their families. A huge and seemingly insurmountable challenge lies ahead. We are overwhelmed and overcome with fear and sadness. But it is perseverance that defines us- not letting the overwhelming scariness cripple us. And living in the uncertainty of how to tackle this giant obstacle gives us strength if we allow it.
Ultimately, when facing an unknown and scary situation, we can either run away from it or we can persevere. Mike continually chooses to overcome, in being a part of RAAM and in always supporting Kyle.
The choice of how to react to big and scary situations is for each individual to make.
Choose to persevere.
In this episode, Kyle & Sean talk about how building community has helped them and how it could help YOU.
“No man is an island…,” as John Donne reminds us.
Growing up with a rare disease is, almost by definition, lonely. Faced with physical limitations that most of our neighbors don’t have to face many times makes us feel odd. With ataxia, we go through issues with balance that make us seem awkward and clumsy; but all people with disabilities face some kind of uncommon limitation, whether its using our arms or leg, trouble hearing, speaking, or seeing, facing mental issues or any other symptom of a disability. The unfortunate result is that many of us with disabilities feel odd.
However, the truth is that people dealing with disabilities are not alone. It’s important for everyone - disabled or not - to be a part of a community, but it’s even more important for people who feel isolated to find support and understanding from those facing similar challenges as them.
Kyle acknowledges that finding a community completely changed his life for the better. As he was coping with his FA diagnosis and its scary debilitating implications, he felt that the community he had in this challenge was limited to his parents and his family. So, in 2007, together they started rideATAXIA with a cross-country ride from San Diego to Memphis, to raise awareness and funds for the research of the disease he faces. It’s now a one-day event in six cities across the US, where people with FA and their friends and family can watch or ride themselves and raise funds for FA research. The best feature of rideATAXIA though is the gathering of people battling FA getting to meet and enjoy the company of others with similar struggles.
The community is the greatest part of rideATAXIA.
Sean talks briefly about the movie that documents his and Kyle's cross-country bike race, The Ataxian. Aside from capturing their participation in the Race Across America, the film showcases the life of someone with FA - from Kyle and Sean to other families affected by this rare disorder. The film is a fundamental conversation-starter: it explores a struggle that is unheard of by most people. The film serves as a building block to bring people in the FA community together.
Kyle talks about going to France, for the first rideATAXIA event in Europe, and Sean is soon going to Australia for a community building trip and for a screening of The Ataxian.
At times we all feel isolated. Finding others with understanding is an essential part of being human, especially for those facing any type of disability.
“To hear from and learn from people who are in the same position...there’s nothing that compares to it.”
A lot of our focus lately has been of Friedreich’s ataxia or FA - the disease that both of us share. And that shouldn’t be a big surprise. FA has had a huge impact on us - it has forced us to see life in a different way and adapt. We have each had friends that have helped shape that impact. One of those friends is Matt Fritsch. Matt has a spinal cord injury and in this episode he joins us for a conversation about how community is essential for all of us no matter what disability we have.
“[Being disabled] is an exclusive club that no one joins on purpose...the parking is a right, not a privilege.”
Matt gives a few tips about navigating life with a disability. One of his most fundamental points is that we cannot do it on our own; that even though doctors, nurses, therapists, and surgeons gave him the same advice, he didn’t pay much attention to what they said, until it was told to him by someone within the spinal-cord injury community.
The need of community for those with disabilities is great. It’s easy to ignore the well-meaning advice and help from others, but when it comes from someone with the same challenges that you are facing - the advice suddenly seems much more important. This applies both within the SCI and FA communities, and among all those facing the challenge of disability.
As promised, here is the second half of our interview with Ron Bartek, president and cofounder of the Friedreich’s Ataxia Research Alliance, or FARA. Please note that the audio quality is less than ideal, but still definitely enjoyable.
Along with Ron’s very impressive resume, we found out that he learned to sleep standing up in Army Ranger School. Ron discovered much of what the body could do when deprived of normal physical needs like sleep and food.
Ron shares about the experience of his son Keith’s diagnosis with Friedreich’s ataxia at nine-years-old. A counselor who noticed Keith’s problems with balance and coordination recommended that Keith go to a neurologist for a check-up. At that appointment few months later, Ron and his wife Raychel were told that Keith had Friedreich’s ataxia (FA), a condition they’d never heard of and couldn’t even spell. When they asked what they could do about this diagnosis, the neurologist gave a grim answer - nothing.
To Ron and Raychel that was not an acceptable answer so they began researching FA on their home computer. They learned about all the symptoms of the disorder, and all of their research was very disheartening. However there was one piece of good news - the year prior (this was in 1997), scientists discovered the specific gene that caused FA. Ron and Raychel believed that since the gene was identified, it would be much easier to find a treatment or a cure, but that there was no organization that specifically researched FA. They decided they would change that.
Ron, Raychel, 5 other parents of children with FA, 1 adult patient, and 3 scientists submitted paperwork to the District of Columbia to initiate FARA and become its first board of directors.
One of FARA’s first actions was the submittal of a proposal to the NIH for the first scientific conference on Friedreich’s ataxia. Four months later, the grant was funded by the NIH, and six months later, that conference was held for people allover the world to attend.
Important to note is at that first conference, no drug company wanted to attend (because it’s too rare, they said) and no clinical trials for FA was ever done. Today, multiple drug companies are aligned with FARA. And they are hopeful for a cure. The source of FARA’s success can be summed up in one word: collaboration. Knowing that FA exists as a rare genetic anomaly is a boring statistic, but meeting FA patients, seeing their strengths and weaknesses, getting to know them - helps to bring out the humanity of those who live with FA.That humanity is central to what FARA is, and who Ron is. Whether he is partnering with a group of scientists and drug companies or following the two stripes on the soldier’s hat in front of him, Ron Bartek recognizes that our strength is found in our ability to collaborate with others.
The idea for the Ataxian Athlete Initiative (AAI) adaptive cycling equipment grant program came when Kyle received a grant from the Challenged Athletes Foundation, which he used to purchase a Catrike recumbent trike. That purchase changed his life: while on it, he didn’t feel as physically limited as he felt most times. Realizing how impactful that grant was for him, he created a grant specifically for people with FA, to purchase adaptive cycling equipment, which is often times cost prohibitive for someone with a disability.
Since 2009, the Ataxian Athlete Initiative has provided 32 individuals with adaptive cycling equipment. The application for 2017 is available now until May 1; any person with ataxia can apply by clicking “Apply for an AAI Grant” at curefa.org/aai, giving information on the applicant and what kind of equipment would work for them. Please remember that this is a competitive application process and funds are limited.
Some tips to consider when applying to the AAI:
Try out various adaptive equipment. Sit in different equipment. Take a spin. Determine what is most fitting and most comfortable for you. Be honest. Tell us how you, individually, would benefit from receiving funds from the AAI, and what impact it would have on your life. Be unique. Make your application far above general - make it personal. Speak from the heart. And remember to focus on what you can and will do.
And don’t forget that even those who don’t receive full or partial funding from the AAI will receive tips on how to make their application stand out more for other equipment grant programs or for the AAI again in the future.
Some of the links we talked about in this episode:
Ataxian Athlete Initiative: http://curefa.org/aai Kyle’s blog post on getting started with your search for adaptive cycling equipment: http://www.curefa.org/rideataxia-blog/a-guide-to-beginning-search-for Challenged Athletes Foundation grant program, Access For Athletes: http://www.challengedathletes.org/programs/grants/
We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance (FARA). Since both of us have Friedreich's ataxia (FA), this organization and Ron himself are special to us.
Note: This episode has some audio imperfections. We still chose to release it, going against the advice of our audio producer. (You’re awesome, Jake.) So we give you the first half of our interview with Ron Bartek. The audio problems are slight, and sound like Kyle banging together two halves of a coconut every now and then. Picture that and we hope that you are able to enjoy this interview as much as we did. Part 2 of this interview comes out in March.
In a word, Ron is a peacemaker. Kyle starts off by reading Ron’s long and impressive bio. Of special note to Ron is that he was able to be a part of the negotiation team for the Intermediate-Range Nuclear Forces (INF) Treaty between The United States and The Soviet Union. As a school kid, Ron dreamed of being able to know enough about global superpowers that he would be able to help orchestrate peace between the US and the Soviet Union. After an impressive military career, he was a part of the INF Treaty, which helped put an end to the Cold War.
Shortly after that treaty was signed, Ron’s son Keith was diagnosed with the rare disorder Friedreich’s ataxia (FA). Suddenly the world of the rare disease community opened up to him, and he decided to use his ample peacemaking skills in the fight against FA.
In discussing the benefits of Rare Disease Day, Ron seemed almost giddy when he described it as the rare disease community being able to voice their opinions to those in charge of the fields of medical research, such as the NIH or the FDA, “increasing the volume and frequency of the patient voice”.
Reaching out to the top medical institutes cannot be stressed enough, says Ron. On June 2, FARA (in partnership with MDA and NAF) is planning a Patient Focused Drug Development Meeting with the FDA. The purpose of this meeting is to remind the FDA of the human quality of a rare disease that they may not hear much about, FA. Patients will be able to participate in person or live, online - FARA will publish details on how to get involved.
Even though some people may see the FDA as a barrier to finding effective treatments or cures for rare disease, Ron is passionately against that idea. He sees FARA’s relationship with the FDA as one of our greatest assets. The goal of FARA and the goal of the FDA is the same - to find a safe and effective treatment and cure for FA. Rather than see the FDA as a barrier, Ron encourages us to see them as trusted teammates.
Whether dealing with The Soviet Union or the FDA, Ron shows the power of peacemaking. We are lucky to have him as a leader for us in the FA community.
REMEMBER THAT RARE DISEASE DAY IS FEBRUARY 28. MAKE YOUR VOICE HEARD!
“See you again, and see you at the finish-line.” -Ron Bartek
"Alone we are rare. Together we are strong." -National Organization for Rare Disorders In this episode we are joined by Paul Melmeyer, Associate Director of Policy at the National Organization for Rare Disorders (NORD). Among other things, Paul is the main lobbyist of NORD and visits Capitol Hill often, frequently meeting with the FDA, Medicaid, Medicare, and other federal services that impact those affected with rare diseases.
NORD’s goal is to be a one-stop shop, offering aid to those facing the challenges of a rare disease. One of the benefits of NORD in particular, and in the entire rare disease community, is the strength of collaboration. That with the same goal in mind - helping with the challenge of rare disease - the collaboration of the entire rare disease community is probably its greatest strength. As more and more people become more and more involved in advocacy within the rare disease community, it’s exciting to picture the progress that can be made 5, 10, 15 years in the future.
Paul tells us about the motivation and dedication of the "intrepid mom's" who founded NORD over 34 years ago. He says that the main reason NORD has been effective for so long is because it tries to be “the voice of those with disabilities.” He credits much of NORD’s success to relationship-building with other entities in the rare disease community.
As the U.S. sponsor of Rare Disease Day which began in Europe in 2008, NORD has played a vital role in raising awareness and continued support, in many different facets, for the entire rare disease community.
For more information on NORD, please visit: www.rarediseases.org
For information on Rare Disease Day, please visit: www.rarediseaseday.org
"We have a big innovation gap in this country when it comes to rare disease therapies. 7,000 diseases and only roughly 300 treatments on the market for those diseases. We have a long way to go and there's a lot of work that needs to be done if we ever want to get to the point where we have one treatment for all of those diseases or even multiple treatments - and that is what our foundation is set up and designed to do."
For our second interview before Rare Disease Day (Feb 28), we chat with Max Bronstein, Chief Advocacy and Science Policy Officer at The Everylife Foundation for Rare Diseases. The goal of the Foundation is to help advance innovation in the rare disease community; to advance knowledge and methods of support for those with a rare disease, and to ultimately look towards developing and enabling access to treatments or cures.
Max is a scientist at heart; he has been published in Nature and The New England Journal of Medicine which makes him a great ally in raising awareness of rare diseases. He uses his background in his job at The Everylife Foundation in two big ways.
One way that he uses his science background is what he calls regulatory issues. He does this by continuously holding meetings with large health and biotech and pharma partners. He speaks directly to the doctors and scientists at the forefront of cutting edge research in health and medicine and reminds them of the reality of rare diseases, a field often overlooked or forgotten.
Another way that Max is a voice for those in the rare disease community is by working in social policy issues. This is when Max sets up meetings with politicians so that the rare disease community is represented. This involves dialoguing with senators and representatives on Capitol Hill whenever drug costs, talks of healthcare, or any other issue related to the rare disease community arises, and also just to meet with them regularly to remind them of the reality of rare diseases. He regularly goes to both the White House and Congress.
Max explains these to us and walks us through a big success that The Everylife Foundation and other organizations helped push through instituted: the 21st Century Cures Act. Keep in touch with The Everylife Foundation to keep up with all of their diverse efforts and find out how you can get involved! Visit their website at http://everylifefoundation.org, and follow them on Facebook: https://www.facebook.com/EveryLife4RareDiseases/, and Twitter: @EveryLifeOrg.
The knowledge and diagnosis of a rare disease can be a frightening time in anyone’s life. However, through education and through connecting to others, support - and hope - is abundant.
“When I started looking at the stats and facts about Rare Disease...that was my catalyst to say, ‘This is the largest disease community on the planet, more than all cancers and AIDS combined, 30 million people here in the US, 350 million people worldwide.’ My big question marks were, ‘Why in the heck isn’t anyone talking about it? Why aren’t we hearing about it in mainstream media? Why aren’t there more resources available for these families?'” - Nicole Boice.
Sean and Nicole agree that the diagnosis of a rare disease with no treatment or cure is awful (“It sucks,” says Sean, the wordsmith.), facing the unknown is an insurmountable challenge. However, with diagnosis, by facing the monster of a disease, you can help defeat it.
Nicole explains that the goal of her organization, Global Genes, is to provide those diagnosed with a rare disorder and their families with support and education. Often support comes, not through classes on the scientific realities of a disorder, but by the connection of different people sharing their personal hardships and successes with each other. With this in mind, many tangible actions Global Genes takes involves building connection in the rare disease community- whether by empowering activists to raise awareness about rare diseases, or building connections between organizations on a global scale.
For Rare Disease Day, February 28, Nicole offers some ways that all of us can help spread awareness: by connecting with a friend or family member with a rare disease and offering them support and information, by hosting or volunteering at a local rare disease awareness event, and even by sharing a simple message “I support #RARE” on social media. See resources and more information at globalgenes.org
Nicole closes her interview with the idea that hope is real and is a driving force in her life and in the lives of those with rare disorders.
Connect with Global Genes on Social Media:
In the rare disease community, strength is in unity and supporting one another.
Image courtesy of debra
February 28th is globally recognized as Rare Disease Day. Since Friedreich’s ataxia (FA), the disease shared by us Dudes, is considered a rare disease, five episodes will come out in February, instead of one episode every other week, as normal.
In this episode we talk about what is meant by “rare diseases” and how rare they really are.
This episode contains snippets of three interviews that will be released in their entirety later in the month. Nicole Boice, the CEO of Global Genes, speaks about the importance of knowledge in the rare disease community; only by knowing all we can about whatever disorder we may face can we successfully move forward. In the second snippet, Max Bronstein of the Everylife Foundation for Rare Diseases reminds us of the importance of policy issues when seeking treatments for rare diseases. Finally Paul Melmeyer from the National Organization of Rare Disorders (NORD) emphasizes the benefits of recognizing Rare Disease Day, and what that has done for the rare disease community overall.
On February 27, the day before Rare Disease Day, our interview with Ron Bartek, President and co-founder of the Friedreich’s Ataxia Research Alliance, will be released.
The Two Disabled Dudes invite you to help us spread awareness this month.
Organizations Highlighted in This Episode:
Global Genes - globalgenes.org
EveryLife Foundation for Rare Diseases - everylifefoundation.org
National Organization for Rare Disorders - rarediseases.org
Friedreich's Ataxia Research Alliance (FARA) - curefa.org
There is a lot of anxiety that comes along with travel, especially when also factoring a disability into the situation. There a few important things that help us battle that anxiety including a strong game plan informed by the experiences of others, and the emotional flexibility to roll with challenges and continue to move forward. In this episode, Kyle and Sean share insights from listener feedback and personal stories of their travels.
In this episode, Kyle tells a story about hailing a cab in China. This photo will help that story come to life:
Travel is freedom. On the surface disability seems to limit that freedom. But it’s not limited, just different. However you need the right mindset to overcome obstacles. Join us as we share a conversation about what informs our approach to travel.
As a follow up to this episode, the next one will feature reactions and stories from our listeners plus our own stories of horror and hilarity from our travel experiences. Please leave your comment below and we will feature some listener feedback on our next episode.
What is self image and why is it important? Join us as we discuss self image and things we can think about to help promote a healthy one.
A couple of videos that Sean referred to in this episode:
https://youtu.be/7XFLTDQ4JMk
https://youtu.be/VaRO5-V1uK0
First of all, thank you for all the kind and encouraging feedback over the past week. Keep it coming! The best way to help the podcast is to visit us on iTunes, and/or Google Play, and/or Stitcher, subscribe, and leave a review - it will help other awesome dudes and dudettes find the show. Thank you! - The Dudes
Life happens and many things are out of our control. What is in our control is how we react to those situations. Our reactions often define the outcome of a situation - good, bad, and anywhere in between. In this episode we talk about our reactions to challenging circumstances. We also give a few examples of people that have had a positive and productive reaction to challenging circumstances.
A few things we talked about in this episode:
Toward the end of the episode, Sean requests that listeners leave a comment about how you face the challenges in your life. Scroll to the bottom of the episode page to leave your comment: Episode 001.
Christopher Reeve accomplished so much after his injury. Our research came from his book Still Me, and from his Wikipedia Page and linked articles.
Jake Juip is wise beyond his years. Check out this charismatic dude in his recent video:
https://youtu.be/OuMBYRWU_tE
Welcome to the Two Disabled Dudes Podcast! In this episode Kyle Bryant and Sean Baumstark talk about becoming friends, creating the podcast and their connection through the diagnosis of Friedreich's ataxia (FA). Sean reached out to Kyle shortly after he was diagnosed with the intent to dream big, execute like mad, and connect to others along the way. What started as a meeting over beer and pizza has developed into a partnership poised to take over the world! :-)
In 2010, Sean and Kyle participated in "The world's toughest bike race" - Race Across America, as part of 4 man Team FARA. The race started in Oceanside, CA and ended in Annapolis, MD. RAAM is not a stage race which means the clock never stops. The team raced 24 hours a day for 8 days. Their amazing adventure is captured in the award winning documentary, The Ataxian.
Sean and Kyle are always dreaming up a list of challenges to do with friends. Their horizons expand as they look to the future with hope and optimism. When strangers become friends we start to see our disabilities objectively and not as a "good" or "bad" force in our lives. Adaptive devices become tools to improve our lives and conversations about disability start to enrich our lives rather than tear them apart. The focus is on the empowerment Kyle and Sean get by connecting to the FA community, the Rare Disease Community, and anyone with similar experiences. Friendship is an incredible force and these Two Disabled Dudes invite you to come along as they continue the adventure.
A few of the resources we talked about in the episode:
Friedreich's Ataxia Research Alliance (FARA): curefa.org. National Organization of Rare Disorders (NORD): rarediseases.org Global Genes: globalgenes.org Rare Disease Day: rarediseaseday.org, for US activities: rarediseaseday.us
If you liked this episode you might enjoy our 2-part Episode 50:
Kyle Interviews Sean: https://twodisableddudes.com/050-sean-kyle-interviews-sean/ Sean Interviews Kyle: https://twodisableddudes.com/050-kyle-sean-interviews-kyle/