It Happened To Me: A Rare Disease and Medical Challenges Podcast

#69 Breath by Breath: Kenny Kasnett’s Journey Through Lung Disease and Transplant

Kenny Kasnett, a seasoned executive and entrepreneur whose life took an unexpected turn with a diagnosis of interstitial lung disease (ILD) joins the podcast for a powerful episode. What began as a persistent cough during a round of golf soon unraveled into a life-threatening condition that would ultimately require a lung transplant.
Kenny opens up about the diagnostic journey, the emotional toll of living with ILD, and the difficult road leading up to transplant surgery. He shares a behind-the-scenes look at the complexities of preparing for and receiving a lung transplant, from waiting on the national registry to the moment he received the life-changing call.
But Kenny’s story is more than medical, it’s about resilience, gratitude, and the extraordinary gift of a second chance at life. He speaks candidly about the pain, fear, and vulnerability he faced along the way, and how he leaned on the unwavering support of family, friends, and a stellar medical team.
We also explore the long-term realities of transplant recovery, from managing medications and monitoring for rejection to navigating new physical limitations with hope and strength. Kenny’s insights offer a beacon of light for others navigating lung disease and chronic illness.
Topics Covered:
Early signs and diagnosis of interstitial lung disease (ILD)
Understanding ILD and idiopathic pulmonary fibrosis (IPF)
Emotional and physical impact of progressive lung failure
Choosing a lung transplant center and navigating evaluations
The day of the transplant: fears, preparations, and gratitude
Recovery and rehab: from ICU to walking again
Long-term care, medications, and monitoring for rejection
How this journey reshaped Kenny’s perspective on life
Advice for newly diagnosed patients and caregivers
The importance of organ donation and honoring the donor
Guest Bio:
Kenny Kasnett is an accomplished business leader with decades of experience in finance, homebuilding, and real estate. Beyond his professional roles, Kenny is a lung transplant recipient and fierce advocate for those living with interstitial lung disease. Through his story, Kenny offers hope, encouragement, and critical insights into navigating serious illness with courage and grace.
Resources & Links:
Learn more about Interstitial Lung Disease (American Lung Association)
National Jewish Health - Interstitial Lung Disease (ILD) Program
Organ Donor Registration – Donate Life
During the interview, Beth referenced a previous episode of It Happened To Me where the inspiring Zach Ship shared about his experience of getting a kidney transplant, this was Episode #44. The following episode (#45) Zach joined us again to talk about his other medical challenge, experiencing blindness before the age of 30. 
 
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

#68 The Hidden Danger in Newborns: OTC Deficiency Explained by a Geneticist and a Mother

In this episode of It Happened To Me, we share a story of love, loss, and advocacy in the rare disease community.
We are joined by Jordan Kruse, whose son, Pruitt, was born with ornithine transcarbamylase (OTC) deficiency, and Dr. Susan Berry, a geneticist at M Health Fairview and professor at the University of Minnesota Medical School, who specializes in rare metabolic disorders like OTC deficiency and helped Pruitt. 
OTC deficiency is a rare urea cycle disorder (UCD) that prevents the body from properly removing ammonia from the blood. This dangerous buildup can cause severe complications, and in Pruitt’s case, tragically ended his life at only six months old. 
Through her grief, Jordan founded The Brave Little One Foundation, honoring Pruitt’s legacy by supporting families facing medical hardship and raising awareness about rare genetic conditions. Together, she and Dr. Berry shed light on:
What OTC deficiency is and how it affects the body
Why newborn screening doesn’t always catch the condition
The role of geneticists and medications in diagnosing and managing OTC deficiency
Jordan’s experience advocating for Pruitt’s care in a complex medical system
The importance of foundations and rare disease organizations in offering resources and hope
What families and healthcare providers need to know about navigating rare disease diagnoses
Resources:
The Brave Little One Foundation
National Urea Cycle Disorders Foundation (NUCDF) 
The Rare Diseases Clinical Research Network (RDCRN Consortia)
The Future of Personalized Medicine is Here: Baby KJ received a first-of-its-kind personalized gene editing therapy at CHOP to treat his urea cycle disorder
Ornithine transcarbamylase deficiency explained by MedlinePlus
 
 Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

#67 Exploring Clinical Trials in Latin America with Julio G. Martinez-Clark

Join us as we delve into the evolving landscape of clinical trials in Latin America with Julio G. Martinez-Clark, CEO of BioAccess. Discover how his company is pioneering pathways for medtech innovators and shaping the future of medical device innovation in emerging markets.
 
Bioaccess® is a trailblazing company that’s helped over 100 Medtech innovators navigate global clinical trials, and he currently serves as Ambassador of International Accrediting Organization for Clinical Research in the Americas. With a career that spans healthcare infrastructure, telecommunications, and regulatory strategy, Julio is a leading voice in the field of medical device innovation in emerging markets.
 
From his early days at Johns Hopkins Hospital to his current role in shaping ethical and efficient trial systems across Latin America, Julio’s mission is clear: to expand access to high-quality research for patients and sponsors alike. He’s also the host of the Global Trial Accelerators™ podcast, where he dives into trends in Medtech, Biopharma, Radiopharma and clinical trial innovation.
 
We unpack what makes Latin America a strategic region for clinical trials, especially for rare diseases, and explore how improving trial access can speed innovation, and change lives.
 
Episode Discussion Topics: 
 
Introduction to Julio G. Martinez-Clark and his role at BioAccess.
The clinical trial landscape in Latin America and its strategic importance.
Julio's career journey from Johns Hopkins Hospital to BioAccess.
The impact of cultural competence and community engagement on clinical trials.
Challenges and solutions for conducting clinical trials during the pandemic.
The role of artificial intelligence and digital tools in clinical trials.
The future of clinical research in Latin America, including radiopharmaceuticals and theranostics.
The importance of international standards and certifications for clinical research sites.
Success stories and innovative approaches in clinical trials.
Julio's podcast, Global Trial Innovators, and its focus on industry education.
During the episode a blog post on bioaccess’ website was referenced that highlights academic papers that talk about the higher recruitment and retention rates in Latin America, here it is: https://www.bioaccessla.com/blog/the-latin-american-advantage-why-clinical-trial-recruitment-and-retention-outpace-the-us-and-europe
 
Connect With Us:
 
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

#66 Not Just Fatigue: Global Advocating for ME/CFS from Bed

In this deeply moving episode of It Happened To Me, we sit down with Elizabeth Ansell, founder of #NotJustFatigue, a nonprofit initiative dedicated to raising awareness about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is a condition that is vastly under diagnosed, possibly 90% which would mean it may affect up to 9 million people. 
 
Elizabeth’s life changed dramatically as a young adult when she developed ME/CFS—a complex, debilitating condition often triggered by infection. Since 2016, she has been bed-bound, living with severe fatigue, cognitive impairment, and post-exertional malaise. Yet, from her bed, she has become a powerful voice for change.
 
Through #NotJustFatigue, Elizabeth educates both the public and medical professionals about this misunderstood illness, challenging harmful myths and confronting the stigma that patients face. In this episode, she opens up about her own diagnostic odyssey, the emotional and physical toll of the disease, and the resilience it takes to advocate while living with severe limitations. 
 
What You’ll Learn in This Episode:
 
Elizabeth’s journey to an ME/CFS diagnosis and how it changed her life
The reality of living bed-bound for nearly a decade
Why post-exertional malaise is a hallmark—and often misunderstood—symptom
How #NotJustFatigue is changing public perception and medical understanding
The connection between ME/CFS and Long COVID
Strategies for supporting someone living with ME/CFS
The role of storytelling in advocacy and awareness
Myths and misconceptions that harm patients
The emotional toll of medical gaslighting
Hopes for the future of ME/CFS research and treatment
More About Our Guest:
Elizabeth Ansell, founder of #NotJustFatigue, is an advocate, storyteller, and changemaker for the ME/CFS community. A graduate of the University of Pennsylvania, she has a background in literature and TV production. Bed-bound since 2016, Elizabeth uses her lived experience and creative skills to educate others about ME/CFS, dismantle stigma, and build community for those navigating the same invisible illness.
 
Here is the visual historical timeline that Elizabeth mentioned during the episode. She also recommends watching #NotJustFatigue’s 15 minute short film about the condition. 
 
An update since we recorded with Elizabeth….
 
In a rare bipartisan move earlier this month (August 2025), the Senate Labor-HHS FY26 Appropriations Report delivered two major wins for the chronic illness community:
Formally recognized ME/CFS within the RECOVER Initiative for Long COVID
Directed NIH to implement the ME/CFS Research Roadmap within 180 days
 
This is a long-awaited breakthrough for millions of Americans with ME/CFS, a post-viral disease that has no FDA-approved treatment and receives just $13M in funding annually, despite being more common than Multiple Sclerosis. Advocates are calling this a major step forward in pushing NIH toward accountability and treatments.
 
Connect With Us:  
 
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

#65 Invisible Swells: Surviving with Hereditary Angioedema Type III

In this episode of It Happened To Me, we sit down with the multi-talented Sally Pirie, a comic artist, painter, professor, toymaker, and rare disease advocate, to explore her journey living with Hereditary Angioedema Type III (HAE-3). Sally’s path to diagnosis was long, painful, and emotionally fraught, culminating in a deeply moving feature in The New York Times that helped shine a national spotlight on HAE and the broader diagnostic odyssey that so many rare disease patients face.
 
Sally opens up about the unpredictable flares of HAE, the mental toll of being misunderstood by the medical system, and how she channels her experiences into art, humor, and education. 
 
She is also Professor of Child and Family Studies and Director and Master Artist at the Comics-Based Research Lab at the University of Massachusetts, Amherst. An award-winning newspaper cartoonist and an anthropologist of childhood and infancy, she received her PhD from the University of Colorado, Boulder and is a graduate of Punahou School and Grinnell College. Her areas of expertise include comics-based research methods, ethnographic research and transgender childhoods. She was the 2020 Distinguished Visiting Professor of Liberal Arts at the University of Minnesota, Morris and the 2021 recipient of the Grinnell College Alumni Award in recognition of her lifetime of public service. She once went to New Year’s Eve fireworks dressed as a huge blue pufferfish because why not. Life should be suffused with art and joy. 
 
Topics We Cover:
What is Hereditary Angioedema Type III, and how is it different from other forms?
Sally’s early symptoms, misdiagnoses, and emotional health during the diagnostic odyssey
Her daughter’s experience with HAE while taking gender-affirming estrogen and being the only documented transgender person with the condition 
The significance of her New York Times feature 
What it feels like to experience an HAE attack and how deadly it can be
Navigating academia and advocacy while managing a chronic illness
How comics and illustration became a therapeutic and educational tool
Invisible illness misconceptions and systemic barriers in rare disease care
The importance of laughter, joy, and resilience in the face of adversity
Advice for undiagnosed patients and caregivers supporting loved ones with rare conditions
You can learn more about Sally on her website. She also highly recommends the Hereditary Angioedema Association for resources. And be sure to read her feature in the New York Times here. 
 
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

#64 Challenging the Label: Living and Thriving with Trisomy 18 Part 2

In this second part of our interview with Sartia Edwards, we continue a conversation about her son Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.
 
Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.
 
Topics Covered:
Navigating medical decision-making and advocating for hope
Mental health support for caregivers of medically complex children
Public policy changes needed in rare disease healthcare
The power of patient-centered storytelling through Sarita’s Being Rare Podcast
Advice and encouragement for families receiving a Trisomy 18 diagnosis
 
Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita’s own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen’s on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more.
 
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

#63 Redefining “Incompatible with Life”: A Mother’s Mission for Trisomy 18 Awareness Part 1

In this powerful episode of It Happened To Me, co-hosts Cathy and Beth sit down with Sarita Edwards, an award-winning advocate, rare disease leader, and mother to Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.
 
Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.
 
Topics Covered:
What is Trisomy 18 and how it affects the body
Elijah’s diagnosis and how it shaped Sarita’s life and career
The challenges of hearing “incompatible with life” as a parent
Misconceptions about children living with Trisomy 18
Elijah’s involvement in Special Olympics and celebrating milestones
The origin and mission of the E.WE Foundation
 
Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita’s own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen’s on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more. 
 
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

#62 Vision Through Music: Empowering Visually Impaired Kids with Adaptive Music Education

In this inspiring episode, we’re exploring the powerful intersection of music and accessibility with three incredible guests: Dr. Bradley Black, a world-renowned pediatric ophthalmologist and founder of the Vision Through Music program, Makayla, a passionate young musician and student in the program, and Maykaya’s mother Joann. 
Dr. Bradley Black (he/him) practiced pediatric ophthalmology and strabismus in Baton Rouge, Louisiana. He is past president of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS) and the Louisiana Academy of Eye Physicians and Surgeons (LAEPS). He has served on the boards of directors of AAPOS, the Children’s Eye Foundation, the Smith-Kettlewell Eye Research Institute, and LAEPS. He received the Honor Award, Senior Honor Award, and the Lifetime Achievement Award from AAPOS and the Achievement Award, Secretariat Award, and the Outstanding Advocate Award from the American Academy of Ophthalmology. He was elected to the American Ophthalmological Society. In 2024, he received the Parks Silver Medal, the highest honor awarded by AAPOS and CEF-AAPOS. Dr. Black is active in international ophthalmology. He served on the Orbis International Cybersight Medical Advisory Board and has performed and taught pediatric eye surgery in more than thirty countries. 
One of his greatest professional achievements to date is founding the Vision Through Music program of the Children's Eye Foundation, which seeks to increase the number of music teachers who work with blind and partially sighted children nationwide. He and his wife, Cindy, have two children and two grandchildren. In his leisure time, you can often find Dr. Black sailing the Gulf of Mexico on his thirty-five-foot sloop.
 
Makayla Alger (she/her) is a passionate student of the Children’s Eye Foundation’s Vision Through Music Program (VTM). From an early age, she found joy in singing and playing on her sister’s keyboard. She is currently learning violin and will soon begin voice lessons through the VTM program. Makayla lives with a mutation to the TUBB4B gene, which has led to degenerative vision and bilateral sensorineural hearing loss. Over time, she has lost night vision, experienced a decrease in peripheral vision, and developed nystagmus. Her mother, Joann, vividly remembers taking Makayla to a pediatric ophthalmologist, who determined she would need glasses for life. Initially overwhelmed and unsure whether her young daughter would keep them on, Joann recalls when Makayla looked up at her parents and with a soft voice appreciatively said, “thank you.” From that moment, she never took her glasses off. Joann says the family has gotten creative to make things more accessible at home. Beyond her love of music, Makayla is also the author of “The Way I See It”, a story following Elena, a visually and hearing-impaired red fox who navigates Vermont’s scenic trails using her heightened senses. Along her journey, Elena meets many woodland creatures and teaches them important lessons about awareness, kindness, and understanding. Makayla and her mom Joann hope to raise awareness about TUBB4B genetic testing, as well as encourage more research into its progression and ultimately a cure.
Whether you’re a parent, educator, healthcare provider, or music lover, this conversation will show you just how transformative inclusive programming can be.
Mentioned in this episode:
Vision Through Music program: VisionThroughMusic.org or email contact@visionthroughmusic.org
Academy of Music for the Blind: ouramb.org
Makayla’s book, The Way I See It available here on Amazon.
Girl Scouts of America: GirlScouts.org 
Summer Camp IN-SIGHT: in-sight.org/camp
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 
 

#61 How Jack’s Basket Is Changing the Down Syndrome Diagnosis Story

In this heartfelt episode we welcome guest Carissa Carroll, M.Ed., Founder and Executive Director of Jack’s Basket, a nonprofit that has transformed the way families experience a Down syndrome diagnosis.
A former educator with degrees from Bethel University and the University of Minnesota, Carissa taught at both the elementary and collegiate levels. But her life—and her mission—changed forever after the birth of her son Jack, and an abrupt, assumptive diagnosis experience. Determined to ensure future families would feel supported, celebrated, and connected, Carissa launched Jack’s Basket in Jack’s honor.
Since then, over 11,000 families in 55 countries have received baskets filled with love, resources, and messages of hope. Carissa now leads her organization full-time and presents to healthcare professionals nationwide on how to deliver diagnoses without bias, while also engaging donors and volunteers who help carry out Jack’s Basket’s powerful mission.
Topics Covered:
What is Down syndrome and how it affects individuals and families
Carissa’s personal story of receiving Jack’s diagnosis and the emotional impact
The inspiration behind launching Jack’s Basket
What’s inside a welcome basket and how it brings comfort to new families
Carissa’s advocacy for bias-free diagnosis delivery in medical settings
Common misconceptions about Down syndrome
Why early connection and community support are crucial
Memorable moments from Jack’s life and the families they’ve served
Advice for new parents, healthcare providers, and loved ones welcoming a baby with Down syndrome
Media highlights, including Carissa’s appearance on The Kelly Clarkson Show and DNA Today podcast (Episode #333)
Jack’s Basket Resources:
Jack’s Basket Website
Request a Basket
Genetic Counseling Webinar: "Communicating Unexpected News"
 
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

#60 CRISPR, Community, and Courage: A Deep Dive into Sickle Cell Advocacy

In this powerful episode of It Happened To Me, co-hosts Cathy Gildenhorn and Beth Glassman are joined by two fierce patient advocates and changemakers in the sickle cell disease community: Wunmi Bakare and Dima Hendricks. Both women are living with sickle cell disease and have transformed their lived experiences into platforms for storytelling, education, and change.
 
They are also the co-hosts of #ThroughTheGenes, a podcast that launched last year on World Sickle Cell Day (June 19, 2024). The show explores gene therapy and other innovative treatments for sickle cell disease while centering patient voices. With a second season debuting again on June 19th (exactly a month from today!), Wunmi and Dima continue to bring much-needed visibility to a condition that is often misunderstood and underfunded. And they will be joined by a new dynamic host, Christelle Salomon!
 
Topics Discussed:
What is sickle cell disease and how it impacts daily life
The emotional and physical toll of living with a chronic, invisible illness
Medical gaslighting and how to advocate for yourself
Finding community and realizing you’re not alone
Blending identity, advocacy, and creativity in the public eye
Insights into gene therapy, including CRISPR technology and treatment considerations
Health equity and why access to care must be a priority in the sickle cell space
The power of patient-centered storytelling through #ThroughTheGenes podcast
 
During the episode Beth referenced a previous episode with someone who has pancreatic cancer, you can listen to Leslie Waldman’s full interview on Episode 25 here. 
 
Catch up with all of season 1 of #ThroughTheGenes podcast right now, before season 2 launches on World Sickle Cell Day on June 19th, 2025. 
 
Both podcasts, It Happened To Me and #ThroughTheGenes are part of Gene Pool Media, the science podcast network. Be sure to check out all these science shows, many of which discuss medical challenges. 
 
Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
 
“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.