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

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

Auteur(s): Cathy Gildenhorn Beth Glassman and Kira Dineen (DNA Today)
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 The mission of our podcast is to support you, our listeners and to create community, as you confront the toughest challenges in life. All of us will experience health hardships. The real question is how we adapt. That is the focus of It Happened To Me, which wants to help you overcome limitations and live a full and satisfying life. Drawing on their own health challenges, hosts Cathy Gildenhorn and Beth Glassman interview guests who share stories and research to help you succeed in the face of difficult health obstacles. It happened to me…I’m not alone and neither are you. We encourage you to learn more at ItHappenedToMePod.com. Please use the contact form on our website to submit your guest suggestions, comments, questions, ideas, and feedback for the show, you can also email us directly at ItHappenedToMePod@gmail.com. It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our ...All rights reserved to the team: Cathy Gildenhorn, Beth Glassman, & Kira Dineen (DNA Today) Science
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  • #72 Wolfram Syndrome Expertise from Dr. Fumihiko Urano [Re-Release]

    #72 Wolfram Syndrome Expertise from Dr. Fumihiko Urano [Re-Release]
    Nov 18 2025

    We’re re-releasing one of our most popular episodes, an important conversation with Wolfram syndrome expert Dr. Fumi Urano.

    We’re bringing this episode back in honor of Diabetic Eye Disease Month, and because it’s the perfect follow-up to our last episode featuring Dr. Rachel Hyman and our very own co-host Cathy Gildenhorn as guests. Their experiences with the milder, adult-onset variant of Wolfram syndrome sparked so much interest, we knew this episode needed another moment in the spotlight.

    You’ll hear Cathy interview Dr. Urano, her lead physician, about symptoms, diagnosis, and promising research underway to help people with rare neurodegenerative disorders like Wolfram syndrome.

    We are thrilled to have Dr. Fumihiko Urano on “It Happened To Me” as he is our co-host Cathy’s lead doctor, for her variant of the rare disease, Wolfram Syndrome.

    Fumihiko “Fumi” Urano, MD, Ph.D., is a Physician and Medical Researcher specializing in Wolfram syndrome, characterized by juvenile-onset diabetes, vision loss, and neurodegeneration. Dr. Urano is a Professor of Medicine and Pathology & Immunology, an attending physician at Endocrinology Genetics Clinic, and currently holds Samuel E. Schechter Endowed Professorship in Medicine at Washington University Medical Center, St. Louis, USA. Dr. Urano is a driving force in the study of Wolfram syndrome and Related Disorders, including WFS1-related disorders/Wolfram-like disorders. As the Director of the Wolfram Syndrome and Related Disorders Clinic and Study at Washington University Medical Center, Dr. Urano has been leading the clinical, translational, and interventional studies of Wolfram syndrome and Related disorders. Dr. Urano's collaboration with colleagues at the medical center and around the world has allowed him to develop cutting-edge treatments for this disease, including gene therapy and regenerative therapy.

    Learn more on their Wolfram syndrome website, wolframsyndrome.wustl.edu. If you want to reach out directly you can contact the Research Nurse Coordinator Stacy Hurst, RN, CDE by calling 314-747-3294 or emailing shurst@wustl.edu.

    During the episode Dr. Urano mentioned two episodes of “It Happened To Me”: during this episode. The first was our interview with Dr. Gladstone in Episode 5. He also gave a shoutout to our conversation with Stephanie Snow Gebel (Snow Foundation) in Episode 9.

    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.

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    34 min
  • #71 When the Diagnosis Comes Late: Navigating Adult Wolfram Syndrome

    #71 When the Diagnosis Comes Late: Navigating Adult Wolfram Syndrome
    Nov 3 2025
    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 confirmationCathy’s daily strategies for living with vision loss, pre-diabetes, and sensory changesThe role of technology and accessibility tools in maintaining independenceHow emotional resilience and community support help patients face uncertain prognosesThe critical importance of genetic testing and awareness for rare neurodegenerative diseasesHope 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.
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    28 min
  • #70 The First Spinraza Patients: A Rare Mama’s Advocacy for her Son with SMA

    #70 The First Spinraza Patients: A Rare Mama’s Advocacy for her Son with SMA
    Oct 20 2025

    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.

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    26 min
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