Axis Advocacy Podcast: Recent Episodes
Axis Advocacy
Giving Sickle Cell Disease patients and their families hope, and helping them survive, thrive, and unite.
We are joined by Teonna Woolford, the Co-Founder + Chief Executive Officer of Sickle Cell Reproductive Education Directive (SC RED). https://sicklecellred.org/
We are joined by Liz Helms, President and CEO of the California Chronic Care Coalition, an alliance of non-profit, social consumer and provider organizations united to improve the health of Californians with chronic conditions or diseases.
We are joined by doctors Donald Kohn of UCLA and Mark Walters of UCSF to discuss Stem Cell Research and Sickle Cell Disease.
Mothers of children with Sickle Cell disease, Adrienne Shapiro and Francesca Valentine, discuss when they received news of their child's diagnosis and how it impacted their families' lives.
Axis Advocacy Founder Adrienne Shapiro discusses the 1st 5 years of the organization, and embarks on the next five years as a grassroots organization serving the Sickle Cell Disease community.
We are joined by Casey Gibson and Shabreon Howard of the 1st annual Sickle Cell Disease Art & Film Festival, taking place on the Axis Advocacy campus in Pasadena, Ca on June 19, 2019.
Tickets are free but you need to have a ticket. https://www.eventbrite.com/e/scd-art-film-festival-tickets-59239860016?aff=efbneb&fbclid=IwAR0bwofPJBZjRNVnyy5RuTYyJr2tpf9vx36xfAMLF4eQESDPZjCcEK_qbCk
We are joined by Jared Snow (aka J.Snow) who is an actor, writer, and stand up comedian hailing from Compton California. He began producing comedy sketches on YouTube– and over thirty million views and several years he's working on a new film called Flawed.
We're also talking about the 1st Annual SCD Art & Film Celebration on June 19th at the Axis Advocacy Campus.
https://www.everybodygotflaws.com
Celebrating the accomplishments of the past year in the Sickle Cell Community, we're joined by Shabreon Howard,a Mother, Photographer/Filmmaker, Sickle Cell Advocate and Writer. Plus we're joined by Nurse Pat Corley and writer Marissa Cors.
Bill Cummings (father, Axis Advocacy board member and blogger) joins us again to talk about some of the legislation taking place with regards to rare diseases.
We're joined by Reverend Gordon Clay Bailey of the Unitarian Universalist Church of the Verdugo Hills. We're talking about how music plays such an important part of our lives.
Sickle Cell Advocactes Shamonica Wiggins and Jewel Darbone of Bold Lips For Sickle Cell join us to discuss their organization and what brought them together.
Dr. Steven Froelich joins us again to discuss the various forms of grief. He'll discuss possible ways to cope. Dr. Froelich is a Team member on the Beverly Hills Police Department’s Crisis Negotiations Team as well as being a member of their Peer Support Team. He also serves as a Mental Health Professional with the Los Angeles County Fire Department’s Critical Incident Stress Management Program.
Bill Cummings (father and blogger) talks about his son's struggles with sickle cell disease and why there is a need for better treatments for this condition.
Our guest is Tanya Price, the President and Co-Founder of Sickle Cell Houston.Serving as Houston’s leading sickle cell Community Based Organization and Coordination Center, they provide various services aimed at achieving healthier outcomes for individuals living with the inherited rare genetic disorder known as sickle cell anemia.
Our guest is Ashley Gregory of the Hemophilia Foundation of Northern California. They provide advocacy, support, and resources to over 3,000 Northern California families (in 47 counties) with a myriad of inherited and acquired blood related conditions.
We're joined by Andy Thorburn, a nonprofit founder, a former classroom teacher and an advocate for people living with chronic illness. He is also running for Congress in CA-39.
Today we’re speaking with many of the presenters and attendees of the recent HD-Care symposium on Huntington’s Disease at UCI. Dr. Neal Hermanowicz, Stem Cell Ambassadors from Americans For Cures, Allen Fernandez of I’m Curable, Frances Saldañia, the President of HD-Care and Dr. Sarah Hernandez
We're joined by Bishop Bob Kabugi from Kenya, Africa and Nurse Advocate Pat Corley to discuss the world wide issues of Sickle Cell Disease.
Dr. Steven Froelich joins us to discuss possible ways for people living with Sickle Cell disease to reduce the added stress of going to the ER. Dr. Froelich is a Team member on the Beverly Hills Police Department’s Crisis Negotiations Team as well as being a member of their Peer Support Team. He also serves as a Mental Health Professional with the Los Angeles County Fire Department’s Critical Incident Stress Management Program.
We're joined by Super Advocate Nita Thompson. Nita has dedicated her life to correcting incorrect perceptions about Sickle Cell Disease. We're talking about World Sickle Cell Day, Juneteenth and the current challenges facing those living with the disease.
We have a very inspirational conversation with Amy Mason. Amy is the director of the Sickle Cell Freedom Cruise, a nanny and someone living with Sickle Cell Disease.
We're honored to be joined by Dr. Thomas Coates, a pediatric hematologist-oncologist in Los Angeles, California and is affiliated with multiple hospitals in the area, including Children's Hospital Los Angeles.
Axis Advocacy co-founders Adrienne Shapiro and Nancy Rene recall some of their favorite podcasts, the huge strides our organization has made in the past year and what the future holds for people living with Sickle Cell Disease.
Today we’re speaking with many of the presenters and attendees of the recent HD-Care symposium on Huntington’s Disease at UCI. Dr. Neal Hermanowicz, Stem Cell Ambassadors from Americans For Cures, Allen Fernandez of I’m Curable, Frances Saldañia, the President of HD-Care and Dr. Sarah Hernandez.
We're joined by Jennifer Braswell, PhD, Executive Director of the Sanford Stem Cell Clinical Center at U.C. San Diego. We'll be discussing various trials and successes in Stem Cell Research.
Links mentioned: Clinical Trials,
CIRM
Axis Advocacy celebrates Black History Month with Rev. Gordon Clay Bailey of Unitarian Universalist Church of the Verdugo Hills and Gerald C. Rivers, who will perform his rendition of the words of Martin Luther King Jr. For more than three decades Rivers has enacted the speeches of the late Dr. King.
We're joined by members of Children's Hospital Los Angeles' Passages Program. Their purpose is to help patients and families transition from pediatric to adult care for their chronic illnesses.
Our guests today are C. Randal Mills, President and Chief Executive Officer of California Institute for Regenerative Medicine (CIRM), Kevin McCormack, Sr. Director Public Communications & Patient Advocate Outreach of CIRM and Bob Harman, Chairman & CEO of VetStem. All three guests have some fascinating things to tell us about how stem cells are curing both people and your pets.
Today we're speaking with many of our fellow Americans For Cures Ambassadors. We were together at The World Stem Cell Summit in West Palm Beach, Florida that took place December 5-9, 2016, and we talked about all the great things that we were experiencing thanks to Americans For Cures.
Today we’ll be speaking with 2 distinguished guests about taking advantage of mental health counseling in dealing with living with this disease, and life in general. We have a conversation with Kimberly Medendorp, a founder of The Peace And Justice Academy, and Jewel Darbone co-founder of Bold Lips For Sickle Cell.
We have a very enlightening conversation with Reverend Gordon Clay Bailey of the Unitarian Universalist Church of the Verdugo Hills.
Our guest today is Dr. Ted Love, CEO of Global Blood Therapeutics. GBT is developing the promising GBT440, as an oral, once-daily therapy for sickle cell disease. http://www.globalbloodtx.com/
We're celebrating the 12th Anniversary of the passage of Proposition 71, which is also known as the California Stem Cell Research and Cures Initiative.
Today’s program is dedicated to Bob Klein,the architect of Prop 71. We’ll be speaking with Kevin McCormack of CIRM… Jason Stewart of Americans For Cures and we’ll have a reading from Don C. Reed’s book “Stem Cell Battles, Proposition 71 and Beyond – How Ordinary People Can Fight Back Against The Crushing Burden of Chronic Disease.”
Our guest is American Society of Hematology Vice President: Alexis A. Thompson, MD, MPH.
She discusses the many resources available from ASH for patients, caregivers and medical professionals dealing with Sickle Cell Disease.
We are honored to have a very informative conversation with Pat Corley. She is an RN, and served as Nurse Coordinator at USC's Comprehensive Sickle Cell Center, Health Care Network, LA County, and University of Southern California.
On this episode, we speak with many of the presenters and attendees of the recent 2 day Sickle Cell Educational Seminar that Axis Advocacy presented with Dr. Carolyn Rowley & Cayenne Wellness Center along with the nursing program of Charles Drew University.
Today's guest is Dr. Yutaka Niihara, M.D. MPH, Emmaus Life Sciences' co-founder and Chairman. He'll be speaking about their promising L-glutamine treatment which just completed its Phase 3 trial for the management of sickle cell disease.
www.emmausmedical.com/Article.aspx?seo=129&l=EN&g=30
Marc Shulman of the National Center on Life Planning joins us today to discuss the importance for families who have a member with a disability, the need for Special Needs Trusts, Conservatorships, Living Trusts and Wills.
We have a very informative conversation with Liz Helms, the President & CEO of The California Chronic Care Coalition, a resource for California health care consumers who are denied coverage, experience delays or are dissatisfied with the decisions made by their health plan.
We have a very informative discussion with Greg Gorgas of Mast Therapeutics, a biopharmaceutical company developing novel, clinical-stage therapies for serious or life-threatening diseases with significant unmet needs, including Sickle Cell Disease.
Axis Advocacy Co-Founders Nancy Rene and Adrienne Shapiro discuss the recent Sickle Cell Symposium in Hollywood with some of the attendees.
Next, they talk about what they learned at the National Medical Association convention in Downtown Los Angeles.
Plus, get a preview of the Axis Advocacy Resource Fair taking place August 13th in Pasadena. All the details at www.axisadvocacy.org.
Dr. Lakiea Bailey of The Sickle Cell Consortium discusses the upcoming convention of Sickle Cell Groups from around the world in Los Angeles. In addition we speak with Dr. Bailey and her mother Doris about the trials and hopes of people living with Sickle Cell Disease.
This week we speak with Mary Hulihan of The Centers For Disease Control And Prevention about how the CDC is helping Sickle Cell patients. She also talks about the misunderstandings that some hospitals have with CDC's guidelines.
In addition, Axis Advocacy Co-Founders Nancy Rene and Adrienne Shapiro discuss the recent Stem Cell Conference where Adrienne presented one of the keynote speeches.
We speak with Dr. Carolyn Rowley, founder of Cayenne Wellness Center, about her organization, the conference they are putting on in September, and Dr. Rowley's Orphanage she built in Kenya. Plus we'll visit with some of the Ambassadors of Americans For Cures.
Axis Advocacy co-founder Nancy Rene has a conversation with board members Cecil McLinn and Ron Shapiro about being fathers of someone with Sickle Cell Disease and some of the frustrations of getting proper care for their child.
On today’s program, Axis Advocacy board members Adrienne Shapiro and Marissa Cors speak with author Judy Gray Johnson who has written books about Living with Sickle Cell Disease. We learn about Judy’s perseverance in the face of living with SCD and the reasons she's written her books.
Axis Advocacy's Adrienne Shapiro and Nancy Rene discuss what can be done to make sure you receive proper treatment when hospitalized. Plus a conversation between HD-Care co-founder Frances Saldoñia and researcher Dr. Joseph Ochaba about the hope for curing Huntington’s disease. Also we’ll speak with some of the Ambassadors of American’s For Cures and Dr. Sydney Galob-Director of the Gross Stem Cell Research Center at the University Of California Irvine.
We dedicate this week's program to the memory of those who lost their battle with Sickle Cell Disease and other genetic diseases.
Learn how you can become a patient advocate for yourself or a loved one.
Today on the Axis Advocacy podcast, we talk with some of the presenters and attendees of the HD-Care symposium. Learn about what it's like to live with Huntington's Disease, and what hope there is in Stem Cell Research.
We honor moms, grandmothers and the children of moms with Sickle Cell Disease on this episode of Axis Advocacy.
In honor of PAIN PATIENTS ADVOCACY WEEK, celebrated annually the last week of April, we learn about living daily with chronic pain from Marissa Cors, a person suffering from Sickle Cell Disease.
Reduce stress and pain with these Guided Visual Imagery Meditations from Mary Frances Spencer.
In this podcast, Adrienne Shapiro and Nancy Rene share their experiences advocating on behalf of patients, and the horror stories they have encountered in hospital emergency rooms. Plus, Kevin McCormack of CIRM discusses the latest advances in Stem Cell Research.
On March 17, 2016, Adrienne Bell-Cors, Founder of Axis Advocacy made a presentation to a group of distinguished scientists at a symposium hosted by CIRM the California Institute for Regenerative Medicine at UC San Diego in La Jolla.
Her remarks came at the end of a long day that featured doctors and research scientists all describing their work on stem cells. Her speech was entitled, “Patient Advocate and Scientist Partnerships.” The audience gave her their full attention, cell phones were put aside, as they looked up, ready to hear what Adrienne had to say.
She began by telling her story of being the fourth generation of mothers in her family to have a child with sickle cell disease. She told of her work forming a support group and attempting to sell T-shirts to raise enough money for research into this painful, often deadly disease.
Adrienne noted with pleasure the passing of Prop 71 which allowed funding for much-needed stem cell research and which supported much of the work that had been described at the symposium.
Adrienne then shared her vision of the patient advocate’s role, supporting patients and helping doctors and researchers reach important patient groups, bridging the gaps in understanding and forging bonds between the medical and patient communities.
Adrienne dedicated her remarks to NaTasha Taylor, a young sickle cell patient who had recently passed away.
At the close of the event there was a panel discussion featuring doctors from City of Hope, UCLA and Glaxo Smith Kline, a pharmaceutical company. Adrienne and Axis Program Advisor Nancy Rene were able to make comments that added to the discussion.
It was clear that Axis Advocacy and Sickle Cell Disease will be an integral part of moving forward with stem cell research.
We speak with presenters and attendees at Axis Advocacy's 1st workshop, "Living With Chronic Pain". The event took place March 26, 2016.