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

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 v...

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: ...

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 difficu...

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 deficien...

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 Inte...

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...

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 diagnos...

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...

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. Sarit...

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. H...

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 a...

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 ...

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 fami...

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...

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 mi...

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 F...

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 reverse...

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 t...

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...