In this insightful episode of It Happened To Me, hosts Beth Glassman and Cathy Gildenhorn (in a rare guest role!) sit down with Dr. Rachel Hyman, a clinical psychologist from Seattle whose experience with Wolfram syndrome was recently featured in The Washington Post here. Wolfram syndrome is a rare genetic disorder that affects vision, blood sugar regulation, and neurological function. Often diagnosed in childhood, it can present very differently from one person to another, and in this episode, we hear from two women living with a milder, adult-onset form of the condition, most common among those of Ashkenazi Jewish descent. Rachel and Cathy open up about the long diagnostic odyssey, early symptoms that were misunderstood, and how it feels to finally have a genetic explanation after years of uncertainty. They share how they’ve each learned to adapt, from managing diabetes and vision loss to embracing new technologies that restore independence. Their stories highlight the power of self-advocacy, medical persistence, and community, reminding listeners that awareness is often the first step toward better care and future research. In This Episode, You’ll Learn: What Wolfram syndrome is and how symptoms are on a spectrum Rachel’s diagnostic journey from gestational diabetes to genetic confirmation Cathy’s daily strategies for living with vision loss, pre-diabetes, and sensory changes The role of technology and accessibility tools in maintaining independence How emotional resilience and community support help patients face uncertain prognoses The critical importance of genetic testing and awareness for rare neurodegenerative diseases Hope for the future of Wolfram research and patient advocacy About the Guests Dr. Rachel Hyman Rachel Hyman is a clinical psychologist based in the Seattle area. She specializes in working with older teens and young adults navigating anxiety and depression and serves as adjunct faculty at Antioch University, where she supervises doctoral students in psychology. Rachel’s personal journey with Wolfram syndrome was featured in The Washington Post, shedding light on this underrecognized condition and the importance of accurate genetic diagnosis. Cathy Gildenhorn Usually behind the mic as co-host of It Happened To Me, Cathy joins this episode as a guest to share her own journey with Wolfram syndrome. She has devoted much of her life to improving the lives of others and connecting women to Jewish life and each other. She has served on several local, national and international boards and currently serves on the board of the Florence Melton School of Adult Jewish Learning. Cathy also served as presidential appointee to the United States Holocaust Memorial Council. While a council member, she worked on the opening of the museum. Recommended Resources Jewish Wolfram Network Johns Hopkins’ The Wilmer Eye Institute Wolfram Syndrome and Related Disorders Clinic and Study at Washington University Medical Center The Snow Foundation Relevant Episodes #3 Wolfram Syndrome with Cathy Gildenhorn #9 Wolfram Syndrome with Stephanie Gebel Snow #18 Hattersley-Urano Wolfram Syndrome with Parent Tamara Blum #21 Wolfram Syndrome with Parent Pat Gibilisco #26 Wolfram Syndrome Expertise from Dr. Fumihiko Urano 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.
In this heartfelt episode of It Happened To Me, hosts Cathy Gildenhorn and Beth Glassman sit down with Nikki McIntosh, a rare disease advocate, writer, and mother whose life changed when her son Miles was diagnosed with Spinal Muscular Atrophy (SMA). Nikki McIntosh is the founder of Rare Mamas®, a resource, and community dedicated to supporting and empowering mothers of children with rare diseases. She is the author of Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease and host of the Rare Mamas Rising podcast. Her mission stems from the profound need she felt after her son was diagnosed with a rare disease, fueling her with a passion and purpose to offer a lifeline of hope and connection to other rare moms. Nikki is a sought-after speaker and a trusted voice in the rare disease space. From national conferences and patient advocacy group gatherings to biotech industry meetings and media interviews, Nikki passionately advocates for the rare disease community. She lives in Southern California with her husband, Tony, and their sons, Mason and Miles. In 2013, at just eighteen months old, Nikki’s youngest son, Miles, was diagnosed with spinal muscular atrophy (SMA)—a rare, degenerative neuromuscular disease. Told there was no treatment, no cure, and that regression was inevitable, Nikki refused to accept a future that offered only decline. She walked away from her career and poured herself into caregiving, advocacy, and an unrelenting search for answers. That search led her and her husband to a clinical trial for a drug that showed promise. Miles was enrolled. The treatment was effective. That drug—now known as Spinraza—went on to become the first-ever FDA-approved treatment for SMA. From that breakthrough moment, Nikki immersed herself in the world of rare disease advocacy. She began writing down everything she wished she had known at the beginning of their journey. With a deep desire to empower other rare moms, she wrote the book Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease. Nikki continues to walk this road alongside her son, and alongside the millions of mothers who are parenting children with rare diseases. She has a deep passion for providing strategies, strength, support, and sisterhood to her fellow rare moms. In This Episode, You’ll Learn: What Spinal Muscular Atrophy (SMA) is and how it affects children and families Nikki’s emotional journey from diagnosis to advocacy How her son’s participation in a clinical trial offered hope and insight The inspiration behind Rare Mamas and its empowering message Strategies for parents navigating rare disease diagnoses and complex healthcare systems The importance of building community and finding your voice as a caregiver How to balance hope for new treatments with the daily realities of care Resources: Nikki’s website that houses all her projects, RareMamas.com Buy Nikki’s book: Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Listen to Nikki’s podcast: Rare Mamas Rising Learn more about SMA via MedlinePlus Patient Empowerment Program, another podcast in our science podcast network Gene Pool Media, is hosted by one of the pharmacists that helped develop Spinraza, the first FDA approved treatment for SMA. Miles was part of the clinical trial. 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
In this powerful episode of It Happened To Me, hosts Beth Glassman and Cathy Gildenhorn are joined by author, advocate, and healthcare leader Laura Kieger, who shares her family’s deeply personal journey with FAP (Familial Adenomatous Polyposis), a rare genetic condition that significantly increases the risk of colorectal and other cancers. Laura’s memoir, Summer’s Complaint, chronicles the emotional and medical challenges her family has faced across generations, from diagnosis and genetic testing to coping with loss and finding resilience. As someone who tested negative for the familial mutation herself, Laura also opens up about "survivor’s guilt", the burden of watching loved ones endure cancer, and how her work in healthcare and leadership has informed her approach to caregiving and advocacy. Whether you're living with a hereditary cancer condition, supporting someone who is, or simply seeking to understand the human side of genetic risk, this episode offers insight, education, and compassion. Topics Covered: What FAP is and how it differs from other hereditary cancer conditions Laura’s family’s diagnosis journey and how it shaped their approach to screening and prevention The emotional experience of receiving a negative genetic test result when others in your family test positive The value of genetic counseling and early detection Misconceptions about FAP and what patients and families should really know How storytelling can raise awareness and build advocacy for rare diseases Highlights from Laura’s memoir, Summer’s Complaint, and what she hopes readers take away Laura Kieger is a healthcare human resources consultant, leadership coach, and author of Summer’s Complaint. With decades of experience improving patient and employee experiences in healthcare settings, Laura brings both professional and personal insight to the conversation around rare diseases and inherited cancer risk. She’s also a passionate advocate and speaker for organizations like the Ronald McDonald House and Care Partners. Be sure to purchase your own copy of Laura’s memoir Summer’s Complaint; all proceeds go to continuing education credits for healthcare providers about hereditary cancer syndromes. During the episode Laura also mentioned a study about green bananas here and a private Facebook support group 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.
Hosts Beth and Cathy sit down with Carrie Francis, a university student and passionate advocate for the blind, visually impaired, and deafblind communities. Carrie, born with a rare 5th-degree facial cleft, has overcome extraordinary medical challenges, including severe blindness and hearing impairment. Despite being told she wouldn’t survive beyond her first week of life, Carrie has defied the odds and is now pursuing a Bachelor’s degree in Psychology while dedicating her life to advocacy and community support. Carrie shares her journey from childhood surgeries and speech therapy to navigating life as a deafblind person. She opens up about the misconceptions surrounding the deafblind community, the resilience required to thrive despite medical challenges, and the support systems that have helped her along the way. This episode is a testament to the power of determination, the importance of advocacy, and the strength it takes to rewrite your story against all odds. Key Topics Discussed: What is a cleft palate, and how does it differ from a cleft lip? The medical and emotional challenges of living with a 5th-degree facial cleft. Navigating life as a deafblind person: adaptations, family support, and advocacy. Overcoming misconceptions about the deafblind community. Carrie's journey to pursuing a degree in psychology and her advice for students with disabilities. Resilience and the factors that helped Carrie defy her initial prognosis. Impact of the Lions Foundation in Canada 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.
Jaime Albright Henighan shares her family’s journey after two of her sons, Joshua and Jorden, were diagnosed with a rare genetic kidney disease called APOL1-mediated FSGS (Focal Segmental Glomerulosclerosis). Jaime’s story highlights the importance of early detection, education, and advocacy for families navigating this challenging condition. She discusses her partnership with Nephcure, a patient advocacy organization, and her mission to raise awareness about FSGS, especially among individuals of West African descent, who are at higher risk due to the APOL1 gene mutation. Topics Covered: What is FSGS?: Understanding APOL1-mediated FSGS and its impact on kidney health. The Family’s Journey: How high blood pressure led to Joshua’s diagnosis, and the shock of discovering Jorden had the same condition. The Role of Genetics: Why individuals of West African descent are at greater risk and the importance of genetic awareness. Early Detection: How identifying symptoms early has helped Jaime’s sons manage their health. Advocacy and Education: Jaime’s work with Nephcure and her efforts to raise awareness globally, including in Ghana. Parenting Through Challenges: Jaime’s emotional journey as a mother and her advice for other parents navigating rare diseases. Key Moments: Jaime explains how her family discovered FSGS and the challenges they faced in obtaining a diagnosis. Insights into the genetic factors behind APOL1-mediated FSGS and its prevalence in specific populations. Advocacy efforts to educate families and healthcare providers about the disease. Guest Bio: Jaime is a wife and mother of six. Her family resides in Alpharetta, GA. She is also a Forensic Interviewer and Podcast Producer at Tenderfoot TV. In 2021, her seemingly healthy 17 year old son, Joshua, was randomly diagnosed with high blood pressure. This led to additional testing and a diagnosis of Focal Segmental Glomerulosclerosis (FSGS), a rare genetic kidney disease. Later that year, her 25 year old son, Jorden, was also diagnosed with FSGS. This was shocking to the Albright Henighan family. How could they be at high risk of a disease that they had never heard of? They connected with Nephcure, a patient advocacy organization, for support and resources. They learned that 1 in 8 people of West African descent are at risk of APOL1 mediated FSGS due to a genetic mutation. Thanks to early detection, her sons are stable today but this is a rare outcome for FSGS patients due to a lack of education and barriers in the medical community. They decided to share their story across the United States and even in Ghana. Their goal is to educate and empower others. If caught early, there are medical interventions and clinical research trials that can save native kidneys and lives. There is hope for FSGS patients. Resources Mentioned: Nephcure Kidney International: Advocacy and support for families affected by kidney diseases. Information on APOL1-mediated FSGS and genetic testing. Tips for recognizing early symptoms of kidney disease. 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.
Guest Amy Raskin shares her experience parenting a child living with type 1 diabetes (T1D) and celiac disease. Amy shares her personal experiences, the challenges her family has faced, and the strategies they’ve developed to support her son Andrew’s health and well-being. Amy Raskin is a pioneer in global thematic investing and widely respected as a bold thought leader. As the Chief Investment Officer of Chevy Chase Trust since February 1, 2014, she has propelled the firm to a leadership position in thematic investing, a small, but rapidly growing approach to investing that MSCI recently added to its universe of style categories. Under her leadership, Chevy Chase Trust has outperformed its global benchmark in each of the last nine years; it is in the top decile of managers for the last 10 years. Amy is also a monthly guest on CNBC. Prior to joining Chevy Chase Trust, Amy was Senior Vice President at AllianceBernstein in New York, serving as Director of Research for Thematic Portfolios, Director of Research on Strategic Change, head of U.S. & Global Growth Equity Research and Chief Investment Officer of AB Venture Capital Fund. The Research on Strategic Change team published in-depth research papers on a wide range of thematic investment topics, such as broadband, China, hybrid vehicles, climate change and molecular medicine. Earlier, she worked as an investment banker at Lehman Brothers and as a research analyst at Donaldson, Lufkin & Jenrette. Amy graduated from the University of Pennsylvania’s School of Engineering and Applied Science with a Bachelor of Science in Engineering. She currently serves on the Boards of UPenn’s Engineering School and of the T1D Fund, which is a venture capital fund focused on finding a cure to Type 1 diabetes. Topics Covered: Understanding Type 1 Diabetes: What T1D is, how it differs from adult-onset diabetes, and the symptoms to look for. A Family’s Journey: Andrew’s diagnosis, the path to confirmation, and how the family adapted to his needs. Living with Celiac Disease: The symptoms, diagnosis, and how it intersects with managing T1D. Daily Life Adjustments: Modifying the home, navigating school and friendships, and encouraging independence. Sibling Dynamics: How Andrew’s older brother, Jason, has adjusted to the care and attention Andrew requires. Advice for Parents: Amy’s wisdom for families facing T1D, celiac, or other chronic conditions. Key Moments: Amy discusses the emotional and practical aspects of explaining T1D to her children. Insights into managing dual diagnoses of T1D and celiac disease. Strategies for balancing a demanding career with the complexities of parenting a child with chronic health conditions. Resources Mentioned: T1D Fund Camp Sweeney Break Through T1D Findmeglutenfree.com Hole In The Wall Gang Camp 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.
Co-host Cathy Gildenhorn takes on the interviewer role to explore the personal story of her co-host, Beth Glassman. Beth shares her journey of living with a childhood autoimmune disease, offering insights into her diagnosis, its impact on her early life, and how it shaped her perspective as an adult. On Episode #54, Beth interviewed Cathy about her journey to parenthood through infertility and adoption. Now, the roles are reversed as Cathy delves into Beth’s experiences, highlighting the challenges, lessons, and resilience that come from growing up with an autoimmune condition called uveitis. Topics Covered: Diagnosis and Early Understanding: Beth’s initial diagnosis, symptoms, and how her healthcare providers and family explained the condition. Family and Social Dynamics: How her family responded to the diagnosis and whether Beth discussed her condition with friends, teachers, or counselors. Navigating Childhood and Adolescence: The impact of the disease on her education, sports, and ability to drive. Living with an Autoimmune Disease: Beth’s thoughts on the potential for passing the condition to her children and how her vision has changed over time. A Healthy Lifestyle: How her childhood experience influences her approach to health and wellness today. Advice for Parents: Beth’s guidance for parents raising children with health challenges. Key Moments: Beth describes how her autoimmune disease affected her vision and how she explains it to others. The importance of open communication with family, friends, and educators about living with a chronic condition. Reflections on resilience and the power of support systems during childhood. 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.
In this heartfelt episode of It Happened To Me, we’re turning the microphone inward as co-host Beth Glassman interviews her co-host and dear friend, Cathy Gildenhorn. Cathy shares her deeply personal journey through family planning, recurrent miscarriages, and adoption, offering hope and guidance to listeners navigating similar challenges. Cathy’s story is one of resilience, love, and the transformative power of creating a family through adoption. From the emotional toll of miscarriages and ectopic pregnancies to the joy of welcoming her children into her life, Cathy provides an honest and inspiring look at her path to motherhood. Topics Covered: The emotional and physical challenges of recurrent pregnancy loss (miscarriages) Understanding ectopic pregnancies and the medical procedures involved The role of hormones in fertility treatments and their potential health risks Deciding to pursue adoption: expectations, processes, and challenges Choosing an adoption agency and navigating the legal requirements Sharing adoption stories with children and discussing birth parents Reflections on the adoption experience and advice for others Cathy’s openness and compassion shine through as she discusses how her experiences have shaped her perspective on family and advocacy. Whether you’re considering adoption, struggling with infertility, or simply looking for an inspiring story, this episode is a must-listen. Resources Mentioned: Gladney Center for Adoption National Council for Adoption The Barker Adoption Foundation It Happened To Me’s Episode #41 Colleen Gioffreda also shares her experience adopting children and helping other kids be placed with families. 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.
In this episode of It Happened To Me, co-hosts Beth Glassman and Cathy Gildenhorn sit down with Laura Bonnell, a seasoned journalist with 25 years of experience in Detroit, founded The Bonnell Foundation in 2010 after her daughters, Molly and Emily, were born with cystic fibrosis (CF). Despite having ten siblings between them, Laura and her husband, Joe, had no idea they were carriers of the disease, as no one else in either family had been diagnosed with CF. Driven by her personal experience and professional expertise, Laura used her platform as a reporter to raise awareness about CF. Before establishing The Bonnell Foundation, she actively raised funds for the Cystic Fibrosis Foundation, participating in the Great Strides Walk fundraisers and speaking at CFF events. Bonnell also organized events like the first Celebrity Softball game with the Detroit Tigers’ wives and launching the "Portraits of Cystic Fibrosis" calendars in 2003—both of which are integral to The Bonnell Foundation's fundraising efforts today. Through her foundation, Laura continues to advocate tirelessly for those affected by CF, leveraging her journalistic skills to amplify the cause and support the CF community. Topics Covered: Understanding Cystic Fibrosis: What it is, how it affects the body, and the daily medical routines required to manage it. Personal Journey: Laura’s experience with her daughters’ diagnoses and the challenges her family faced. Advocacy Through Journalism: How Laura’s skills as a journalist influenced her podcast, Living With Cystic Fibrosis, and her advocacy work. The Bonnell Foundation: From organizing the first Celebrity Softball game with the Detroit Tigers’ wives to producing the "Portraits of Cystic Fibrosis" calendars, Laura discusses her foundation’s mission and impact. Challenges and Progress: The evolving landscape of CF treatment, including the life-changing potential of medications like Trikafta. Community Support: How The Bonnell Foundation helps families navigate life with CF and fosters a sense of connection. Resources Mentioned: The Bonnell Foundation The Bonnell Foundation Facebook The Bonnell Foundation X The Bonnell Foundation Instagram Living With Cystic Fibrosis Podcast 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.
In this episode of It Happened To Me, we’re honored to welcome Sam Ahlstrom, father to Zoey, a remarkable young girl living with Rett syndrome. Sam shares his family’s journey from diagnosis to advocacy, offering an inspiring look into how they’ve transformed challenges into opportunities for connection and innovation. Rett syndrome is a rare neurological disorder that impacts nearly every aspect of life, from mobility to communication. Sam recounts his family’s experience navigating this complex condition, from recognizing the early signs to adapting their daily routines. He also discusses the emotional and practical hurdles they faced as parents and how they found strength through community and creativity. Highlights from the Episode: What is Rett syndrome? Sam explains the condition and its impact on individuals like Zoey. The diagnostic journey: How Sam and his wife Sarah discovered Zoey’s condition and adapted to the new challenges it brought. Creating connection during isolation: The inspiration behind the pRETTy happy. podcast, which became a lifeline for their family and others during the pandemic. Innovative solutions for complex needs: Sam shares the mission of pRETTy happy. place, the company he and Sarah founded to develop adaptive equipment and toys that bring joy and independence to individuals with complex medical needs. Building a community: Sam reflects on the importance of connection and support for families navigating rare diseases like Rett syndrome. Key Takeaways: The power of resilience: How Sam’s family turned challenges into opportunities for advocacy and innovation. The importance of community: Building connections with others who understand the journey can make all the difference. Creativity in action: How pRETTy happy. place is making life easier and more joyful for families like theirs. Resources: Listen to the pRETTy happy podcast Check out pRETTy happy place’s shop pRetty happy place’s Ep 23 and Ep 24 with Colleen English 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.
Carol Tomkovich
Really enjoyed listening to this!