Shows
It Happened To Me: A Rare Disease and Medical Challenges Podcast#62 Vision Through Music: Empowering Visually Impaired Kids with Adaptive Music EducationIn 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 Child...2025-06-1638 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#61 How Jack’s Basket Is Changing the Down Syndrome Diagnosis StoryIn 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...2025-06-0243 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#60 CRISPR, Community, and Courage: A Deep Dive into Sickle Cell AdvocacyIn 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 s...2025-05-1936 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#59 From Diagnosis to Memoir: Laura Kieger’s Mission to Share Her Family’s FAP StoryIn 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 "surviv...2025-05-0530 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#58 Living Deafblind: Carrie Francis’ Resilience After 5th Degree Facial CleftHosts 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 perso...2025-04-2144 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#57 APOL1-Mediated FSGS: What Families Need to Know, from Diagnosis to AdvocacyJaime 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?: Unders...2025-04-0730 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#56 Navigating Dual Diagnoses: Amy Raskin Shares Parenting Strategies for Diabetes and CeliacGuest 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...2025-03-1745 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#55 Growing Up with a Childhood Autoimmune Disease with Beth GlassmanCo-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.
Top...2025-03-0341 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#54 Family Planning Challenges: Cathy Gildenhorn on Miscarriages and The Miracle of AdoptionIn 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 moth...2025-02-1730 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#53 From Journalist to Advocate: Laura Bonnell’s Mission to Support Cystic Fibrosis FamiliesIn 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...2025-02-0348 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#52 Adaptive Toys for Kids with Disabilities: Inspiration from Daughter with Rett SyndromeIn 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...2025-01-2041 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#51 Niemann-Pick Type C: Understanding Symptoms, Genetics, and New TreatmentsIn this episode of It Happened To Me, we dive into the world of Niemann-Pick Type C (NPC), a rare genetic condition that affects fewer than 1,000 people in the United States. NPC is a progressive disorder impacting the brain, nerves, and major organs, often referred to as "childhood Alzheimer’s" due to its neurological effects.
Our guests bring both personal and professional expertise to the conversation:
Barbara Lazarus is the mother of two adult sons (now in their 30s), who have Niemann-Pick Type C disease. David is taking Myplyffa, through an expanded access program. Both David and...2025-01-0646 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#50 Neuromuscular Neurology Explained: Symptoms, Treatments, and Advances with Dr. BucelliTo celebrate our 50th episode we are honored to welcome Dr. Robert Bucelli on the show. He is a leading expert in neuromuscular neurology and a dedicated advocate for advancing treatments for neuromuscular disorders.
In this episode, Dr. Bucelli shares his wealth of knowledge on neuromuscular neurology, exploring topics such as:
What neuromuscular neurology entails and who is affected.
The role of genetics in diagnosing and treating neuromuscular disorders.
Common symptoms, risk factors, and diagnostic approaches.
How therapies like physical and occupational therapy play a role in management.
Lifestyle modifications, including diet and exercise, to minimize r...2024-12-1640 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#49 Living with NMOSD: Alex Brito's Journey of Resilience and AdvocacyIn this inspiring episode of It Happened To Me, hosts Cathy and Beth sit down with Alex Brito, a remarkable advocate in the rare disease community and one of the first 100 individuals diagnosed with neuromyelitis optica spectrum disorder (NMOSD). NMOSD is a rare neurological disease that affects an estimated 6,000 Americans, causing severe and unpredictable relapses that can lead to vision loss, chronic pain, and paralysis.
Alex shares her journey, from the challenges of misdiagnosis and temporary paralysis to her empowering outlook on life with NMOSD—she affectionately refers to the condition as “her bestie.” Alex’s dedication to advoc...2024-12-0228 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#48 Sudden Cardiac Death with The Dressmaker’s Mirror’s Dr. Susan LiebmanIn this episode of It Happened To Me, we are honored to speak with Dr. Susan W. Liebman, a trailblazing molecular geneticist whose work has revolutionized our understanding of protein misfolding diseases such as ALS and Alzheimer’s. Dr. Liebman has spent her career using yeast as a model organism to uncover the mechanisms behind these diseases, advancing the field of molecular genetics. With over 100 publications in leading journals, including Nature, Science, and Cell, and more than $13 million in research funding, her contributions to the field are substantial. Susan began her scientific journey as one of MIT’s early femal...2024-11-1838 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#47 Living with NAION: Rachel Schreiman’s Journey Through Vision Loss and AdvocacyIn this powerful and educational episode of It Happened To Me, we sit down with Rachel Schreiman who turned her personal struggle with vision loss into a mission to support others. Rachel shares her story of resilience after experiencing two episodes of Non-Arteritic Anterior Ischemic Optic Neuropathy (NAION), a rare and debilitating eye condition caused by insufficient blood flow to the optic nerve. These episodes left her with significant central vision loss, but instead of giving up, Rachel embraced a new path.
Rachel Schreiman is a CPA and musician who holds an MBA from the U...2024-11-0456 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#46 Decoding Colon Cancer: Expert Insights on Screening and Genetics from Gabrielle ShermanskiTo learn about colon cancer, we are joined by Gabrielle Shermanski. Gabrielle Shermanski completed her Master of Science in Human Genetics at Sarah Lawrence College in 2020. She is a licensed, board-certified Genetic Counselor at Geisinger with 4 years of clinical experience in adult oncology. Gabrielle's primary interests include helping patients with inherited breast cancer syndromes and inherited GI syndromes facilitate further care and communicate results to family members. Gabrielle has a strong interest in education, mentorship, and outreach opportunities. Her hobbies outside of work include cooking and hanging out with her puppy, RJ.
During the episode G...2024-10-2127 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#45 Adapting to Blindness Before 30 with Zach ShipIn the second part of our conversation with Zach Ship, hosts Cathy and Beth explore the next chapter of his journey—an unexpected health crisis that led to blindness and hearing loss.
Before listening to this episode, check out the first part of our conversation with Zach about his kidney transplant. This is our previous episode (#44).
While on vacation in Madrid, Zach suffered from encephalitis, or brain inflammation that resulted in a vasculitis, which is effectively a stroke to the eyes. This episode dives deep into Zach’s physical and emotional recovery...2024-10-0749 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#44 How a Kidney Transplant Saved Zach Ship’s Life at 19In this episode of It Happened To Me, hosts Cathy and Beth sit down with Zachary Ship, a remarkable individual who has faced incredible health challenges. This is part one of the conversation where Zach shares the powerful story of how his mother, Shari, donated a kidney to save his life. Shari was a guest on our last episode of It Happened To Me (#43). At just 19 years old, Zach was diagnosed with end-stage renal failure due to an autoimmune disease. He takes us through the emotional rollercoaster of receiving a life-saving transplant from his mother while navigating the challenges...2024-09-1630 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#43 Shari Ship on Donating Her Kidney to SonShari Ship's story is a remarkable tale of a mother's unwavering love and sacrifice for her son. As a widow and caregiver to her 97-year-old mother, Shari selflessly donated a kidney to her son Zachary, who was diagnosed with a rare autoimmune disease called membranous nephropathy that attacked his kidneys. Despite the challenges of caring for her ailing husband who passed away from lung cancer, Shari remained steadfast in her commitment to her family.
When Zachary's condition worsened, leading to end-stage renal failure, Shari made the courageous decision to become a living kidney donor for h...2024-09-0247 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#42 Huntington’s Disease with Tanita AllenIn this episode of It Happened To Me, hosts Cathy and Beth are joined by Tanita Allen, a resilient advocate for Huntington’s Disease (HD) and the author of the touching memoir, We Exist. Tanita shares her personal journey with HD, from her initial symptoms and challenging diagnostic process to her current role as a self-advocate and member of The HD Community Advisory Board.
Tanita discusses the complexities of living with HD, a condition often described as a combination of Parkinson’s, ALS, and Alzheimer’s. She offers insight into the importance of genetic testing, the imp...2024-08-1937 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#41 Dwarfism with Colleen Gioffreda“The most charming person I have ever met” is how our host Beth describes the guest in this episode, so you are in for a treat. We have the dynamic, charismatic Colleen Gioffreda! Colleen is the Clinical Operations Program Administrator for the Greenberg Center for Skeletal Dysplasias in the Department of Genetic Medicine at the Johns Hopkins University School of Medicine. She handles patient inquiries, coordinates the Little People of America (LPA) Medical Advisory Board clinics at the national conferences and regionals, provides school/social resources to patients and parents, and also manages budgets and databases.
In h...2024-08-0557 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#40 Overcoming Crohn’s Through Pilates with Ryan HodgkinsonIn this insightful episode of It Happened To Me, we are joined by Ryan Hodgkinson, a highly respected Pilates instructor whose journey into fitness was profoundly shaped by his personal battle with Crohn’s disease. With over two decades of experience in martial arts and personal training, Ryan has developed a unique approach to Pilates that caters to the individual needs of his clients.
Ryan Hodgkinson, PMA® CPT, ACE CPT, was first introduced to Pilates by his sister Heidi, a licensed Physical Therapist and certified Pilates Instructor, to help him with ruptured discs he suffered as a re...2024-07-1542 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#39 Genetic Testing for Rare Diseases with Amy PattersonGenetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasias.
Amy Patterson (she/her) is a licensed pediatric and adult genetic counselor in the Johns Hopkins Department of Genetic Medicine. She primarily works with patients in the Greenberg Center for Skeletal Dysplasias as well as the General Genetics clinic. Especially in the skeletal dysplasia space, Amy works to promote a holistic patient experience, including psychosocial counseling, connection with patient advocacy groups, informed consent, genetic testing and interpretation of results, coordination of care, and discussion of re...2024-07-0142 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#38 Dr. Tara Zier on Stiff Person SyndromeIn this enlightening episode of It Happened To Me, we are joined by Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation. Dr. Zier shares her personal journey with Stiff Person Syndrome (SPS), a rare and debilitating autoimmune disorder, and discusses her mission to advance research, treatments, and awareness for this condition.
Introduction:
Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation
Background on Stiff Person Syndrome: a rare autoimmune disorder characterized by muscle stiffness and painful spasms
Key Discussion Points:
Understanding Stiff Person Syndrome:
Description and symptoms of SPS
...2024-06-1745 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#37 Congenital Hyperinsulinism with Advocate Julie RaskinIn this enlightening episode, we are joined by Julie Raskin, Chief Executive Officer of Congenital Hyperinsulinism International (CHI). Julie's journey began when her son Ben was born with congenital hyperinsulinism (HI), a condition that causes the overproduction of insulin leading to severe hypoglycemia. Determined to improve Ben’s life and the lives of others affected by HI, Julie co-founded CHI in 2005.
Discussion Topics:
Julie shares her son Ben’s story, his diagnosis with HI, and the journey that led to the formation of CHI.
Symptoms of congenital hyperinsulinism (HI) and the challenges in dia...2024-06-0351 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#36 Cochlear Implant Surgery and Recovery with Marc BassinIn the last episode of "It Happened To Me," (Episode 35) Marc Bassin shared his experience of sudden hearing loss in his left ear. After four years and countless healthcare providers, he went through with having a cochlear implant surgery.
The first interview in Episode 35 was recorded before his surgery. If you haven't yet listened to Marc's previous episode on the podcast, we highly recommend checking it out for a comprehensive understanding of his journey leading up to the surgery.
This episode was recorded after Marc recovered from the procedure and shares his...2024-05-2033 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#35 Sudden Hearing Loss with Marc BassinDespite leading an active lifestyle, Marc experienced a sudden and unexpected loss of hearing in his left ear, dramatically altering his daily life. Join us as Marc shares his courageous journey from the onset of hearing loss to his upcoming cochlear implant surgery.
Marc is not your typical real estate professional. With a penchant for adventure, he spends his leisure time biking thousands of miles annually, hitting the golf course, playing pickleball, and conquering ski slopes. However, his world was turned upside down on October 26th, 2019, when he encountered the startling reality of sudden hearing l...2024-05-0636 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#34 Bloom Syndrome with The YasbinsIn this episode we have a special discussion lined up on Bloom Syndrome, featuring our guests Melanie and Lorne Yasbin, who will share their family's experience with this rare genetic disorder.
Melanie received her J.D. from Villanova School of Law, and a B.A. in Political Communications with a minor in religion from The George Washington University.
After working for the Federal government for several years, Melanie joined a private practice where she represents railroads in negotiations with each other and before Federal agencies.Melanie dedicates time to causes and organizations whose missions s...2024-04-1531 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#33 Tay-Sachs and Grief with Myra SackIn our last episode (#32), we had the privilege of speaking with Matthew Goldstein, CEO of JScreen, about genetic screening. In this conversation, we are honored to welcome his wife, Myra Sack, a writer, coach, and activist, to share her family's journey and honor the memory of their daughter, Havi, who passed away from Tay-Sachs disease in 2021.
Myra Sack is not only a dedicated parent but also a passionate advocate and writer. Her memoir, Fifty-Seven Fridays, is a poignant reflection on navigating life's most painful realities and finding beauty amidst grief. With a background in social i...2024-04-0133 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#32 Tay-Sachs and Carrier Screening with Dr. Matthew GoldsteinA physician-scientist father shares his heartbreaking story of the death of his daughter who was diagnosed with Tay-Sachs disease and how it motivated him to become the CEO of JScreen to prevent this experience in other families.
Matt Goldstein is a physician-scientist and entrepreneur. He has founded companies, built R&D teams, and led strategy and execution of both pre-clinical research and clinical development. Prior to joining JScreen and Emory University, Matt was a Partner at Related Sciences, a venture creation firm. As an entrepreneur at Third Rock Ventures he spent a decade building and operating Third R...2024-03-181h 05
It Happened To Me: A Rare Disease and Medical Challenges Podcast#31 Blood Transfusion Therapy with Lori Harada & Carly NewtonIn this episode we are learning about blood transfusion therapy with a focus on the patient experience.
Our Executive Producer, Kira Dineen, joins as a co-host since she has a scientific background.
Lori Harada is a registered nurse who also serves as Senior Manager, Technical Excellence Team, for Terumo Blood and Cell Technologies. This is a team of 12 specialists who provide education and support for both the Spectra Optia® Apheresis System and the Trima Accel® Automated Blood Collection System.
Lori is no stranger to this industry. She brings...2024-03-0439 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#30 Rare Disease Advocacy with Wes MichaelIn honor of Rare Disease Month, we're thrilled to welcome a special guest to our podcast episode: Wes Michael, President, and Founder of Rare Patient Voice. With over two decades of experience in rare and orphan diseases, Wes has dedicated his career to amplifying the voices of patients and caregivers in medical research and development. Join us as we delve into the story behind Rare Patient Voice, its mission, and the invaluable role it plays in shaping the future of healthcare.
Before we dive into our conversation with Wes, let's take a moment to acknowledge R...2024-02-1936 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#29 Exploring the Potential of Artificial Corneas with Dr. Esen AkpekIn this riveting episode of 'It Happened to Me', join co-hosts Cathy Gildenhorn and Beth Glassman as they sit with Dr. Esen Akpek, a leader in corneal and stem cell transplantation. Listen as Dr. Akpek sheds light on emerging research around a groundbreaking synthetic corneal device. This conversation is a beacon of hope for those at high risk of failure from traditional donor corneal transplants and for anyone interested in advancements in ophthalmology.
Discover the intricacies of corneal transplantation, the common eye disorders that affect corneal transparency, and the importance of regular eye check-ups and vaccines in...2024-02-0523 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#28 Dry Eye with Dr. Esen AkpekWe are joined by Dr. Esen Akpek to discuss dry eye, what it is and what we can do to relieve it.
Dr. Esen Akpek (she/her) is the Bendann Family Professor of Ophthalmology at The Wilmer Eye Institute, The Johns Hopkins University Medical School. Her area of expertise is in the fields of ocular surface diseases and corneal transplantation. Her current research centers around developing a synthetic corneal device for patients who are at high risk of failure with donor corneal transplantation. She combines the rare characteristics of superior surgical skill and patient empathy. You...2024-01-1535 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#27 Prevention of Blindness SocietyTwo experts from the Prevention of Blindness Society: Sean Curry and Caren Forsten, join as our guests for our first episode of 2024!
Sean Curry, MPH, serves as program director for the Prevention of Blindness Society (POB) of Metropolitan Washington. In this role, he oversees the POB’s comprehensive suite of low vision programs, the See For Yourself screening and education program, and program measurement and evaluation activities. Sean also provides guidance for POB’s public health information initiatives.
Previously, Sean worked in public health promotion with Penn Medicine Lancaster General Health. Sean ear...2024-01-0137 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#26 Wolfram Syndrome Expertise from Dr. Fumihiko UranoWe 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...2023-12-1833 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#25 Pancreatic Cancer with Patient Advocate Leslie WaldmanPancreatic cancer occurs when a cell in the pancreas is damaged, causing the malignant or cancer cell to form in the tissue of the pancreas. The pancreas is a gland about 6 inches long and is shaped like thin pear lying on its side. The pancreas lies between the stomach and the spine.
The risk of developing pancreatic cancer increases with age, with about ⅔ of patients being diagnosed at age 65 or older. Slightly more men than women are affected.
Cigarette smoking is one of the biggest risk factors. Other risk factors include:
Being ove...2023-12-0444 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#24 Neuro-Ophthalmic Disorders with Dr. Andrew CareyWe are honored to have Dr. Andrew Carey as a guest on this episode of on It Happened To Me. As a disclosure, Dr. Carey is our co-host Cathy Gildenhorn’s Doctor who diagnosed her rare disease, Wolfram Syndrome.
Andrew R. Carey, MD (he/him) is an Assistant Professor of Ophthalmology in the division of Neuro-Ophthalmology at the Wilmer Eye Institute. He specializes in neuro-ophthalmic disorders such as optic neuritis, uveitis related papillitis, ischemic & hereditary optic neuropathies as well as diseases of the retina, including age-related macular degeneration, diabetic retinopathy, toxic retinopathies and inherited disorders of t...2023-11-2055 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#23 Autoimmune Conditions with Dr. Colby KashDr. Colby Kash is featured on this episode of “It Happened To Me”. Dr. Kash is the author of The Autoimmune Plague: How to Regain Sovereignty Over Your Body and Life.
He is an author who has pivoted out of clinical practice and is dedicated to improving health through modern technologies and evolutionary biology. Dr. Kash is also a lecturer on wellness and a co-founder of biotechnology companies and an investment group.
Dr. Kash has experienced his own set of Medical Challenges. Crippling digestive issues that advanced to Crohn’s disease, as well as psoriasis and infla...2023-11-0654 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#22 Papillary Thyroid Cancer with Carly FlumerCarly Flumer was diagnosed with stage I papillary thyroid cancer at the age of 27 and again at 31. While being diagnosed with cancer at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy. She received her Master’s degree from Boston University in Health Communication and Bachelor’s from George Mason University in Health Administration and Policy.
Resour...2023-10-1620 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#21 Wolfram Syndrome with Parent Pat GibiliscoWe are releasing this episode in honor of Wolfram Syndrome Global Awareness Day which is celebrated on October 1st. The Wolfram Syndrome community worldwide is working to increase awareness and ultimately find a cure for Wolfram Syndrome. To learn more about Wolfram you can also listen to Episodes 3, 5, 9, and 18 of It Happened To Me.
Pat Gibilisco is Patient Advocacy Liaison for the Snow Foundation for Wolfram Syndrome research. Pat is Co-Founder of the first Wolfram Syndrome Website and Family Support Group, which launched in 1998 when her 12-year-old daughter, Lauren, was first diagnosed with Wolfram Syndrome. I...2023-10-0228 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#20 Familial Dysautonomia FoundationIn this episode of It Happened To Me we are learning about the genetic conditions Familial Dysautonomia with three lovely guests: Lanie Etkind, Rita Taryan, and Keshi Taryan-Kigel.
Lanie Etkind was appointed Executive Director of the Familial Dysautonomia Foundation in 2017. Lanie's professional background has included fundraising roles in both healthcare and the performing arts. Lanie recently completed a Certificate program in NonProfit Leadership in cooperation with Northwestern University.
Rita Taryan and her daughter, Keshi Taryan-Kigel, also join the show. Keshi is a Familial Dysautonomia (or FD) patient in her early 30s and...2023-09-1848 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#19 Pierre Robin Syndrome with Corinne MerlinoCorinne Merlino was born with Pierre Robin Syndrome, a rare congenital birth defect that affects craniofacial development. Navigating life as a patient from a young age sparked her passion for science, medicine, and advocacy, and ultimately inspired her to pursue a career in genetic counseling.
Corinne currently works as a clinical research coordinator for -The Palliative and Advanced Illness Research- or (PAIR) Center- at The University of Pennsylvania. There she supports multiple studies focused on improving the effectiveness and efficiency of specialty palliative care services for seriously ill patients.
With our Exe...2023-09-0436 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#18 Hattersley-Urano Wolfram Syndrome with Parent Tamara BlumIn this episode we continue our conversation with Tamra Blum. Tamara was on the last episode (Episode #17) of It Happened To Me where we discussed mental health. Tamara shared her expertise as a licensed clinical social worker to help listeners develop a mental health toolkit and answered several FAQs about therapy and more.
Tamara is a Licensed Clinical Social Worker (LCSW) in St. Louis, Missouri with a MSW from the Brown School at Washington University. She has worked with grieving families, on college campuses, and as a graduate and post-graduate level supervisor. Tamara has also ser...2023-08-2133 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#17 Mental Health Help with Social Worker Tamara BlumIn this episode our guest is Tamara Blum. Tamara is a Licensed Clinical Social Worker (LCSW) in St. Louis, Missouri with a MSW from the Brown School at Washington University. She has worked with grieving families, on college campuses, and as a graduate and post-graduate level supervisor. Tamara has also served as a consultant to the National Center for Deaf-Blindness and has been providing psychotherapy and mental healthcare in her private practice serving teens, adults, couples, and families since 2012.
Tamara is the proud single mom of 6 children. Her 5 surviving children includes 26-year-old Andrew who has the...2023-08-0742 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#16 ALS with Brooke EbyAt the age of 29, Brooke received a devastating diagnosis. After four years of confusing symptoms in her leg, Brooke Eby was diagnosed with ALS in March 2022. She hopes to spread awareness of amyotrophic lateral sclerosis (ALS) to as many people as possible and laugh along the way. Brooke has appeared as a guest on the Today Show, interviewed by Savannah Guthrie. You can also read the essay she wrote for the Today Show.
Brooke, thank you so much for sharing your story with us. Listeners, you can follow along with her journey across all social m...2023-07-1739 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#15 Bullous Pemphigoid with argenxWe have fabulous guests this episode sharing their expertise about a skin condition called Bullous Pemphigoid: patient advocate Dr. Naomi Bishop and argenx’s Associate Director of Global Patient Advocacy Shelley Gerson.
Naomi Bishop, M.D. (she/her) is a physician-medical writer/editor with a rich background in the arts. Following a career in dance and graphic design, she pivoted to medicine, where she channeled her fascination with human physiology and commitment to helping others achieve optimal health. With a young family in tow, Dr. Bishop completed the required preparatory courses and attended medical school, wher...2023-07-0352 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#14 Multifocal Motor Neuropathy with argenxWe have two incredible guests this episode who share their expertise about an autoimmune condition multifocal motor neuropathy: patient advocate Jennifer Burgand and argenx’s Chief Scientific Officer Dr. Peter Ulrichts.
Jennifer Burgand, originally from WI moved to Atlanta, GA after college and was an elementary school teacher and assistant principal UNTIL the Big Apple called her name and she is now a successful Channel Sales Manager. Jennifer has been a fitness enthusiast since she was a young child. She was in gymnastics and dance from the age of 5 and as she got older sh...2023-06-1944 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#13 Medical Challenges Toolkit with Kimberly CallinanKimberly Callinan provides a toolkit for medical challenges throughout life.
Kim Callinan is the President and CEO of Compassion & Choices where she has had a leadership role in realizing patient directed end of life care for the past seven years. Kim is frequently invited to speak at conferences, testify before state legislatures, conduct policy briefings and serve on committees as an expert on end-of-life care options.
In this episode our conversation will not focus on End of Life care, it will focus on helping listeners become empowered consumers. Consumers...2023-06-0533 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#12 Bardet Biedl Syndrome with The Alms (Part 2)Be sure to listen to part 1 in Episode #11!
Parents Bonnie and Will Alms share their son's diagnostic odyssey with Bardet Biedl Syndrome. Everett’s condition is a rare genetic disorder. People may suffer symptoms that include retinal degeneration, obesity, reduced kidney function, extra digits of the hands or feet, as well as many other manifestations.
You can learn more about Everett in this article.
Stay tuned for the next new episode of It Happened To Me! In the meantime, you can listen to our previous episodes on Apple Po...2023-05-1549 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#11 Bardet Biedl Syndrome with The Alms (Part 1)Parents Bonnie and Will Alms share their son's diagnostic odyssey with Bardet Biedl Syndrome. Everett’s condition is a rare genetic disorder. People may suffer symptoms that include retinal degeneration, obesity, reduced kidney function, extra digits of the hands or feet, as well as many other manifestations.
You can learn more about Everett in this article.
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 pl...2023-05-0143 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#10 Low Vision with Dr. Judith GoldsteinDr. Judith Goldstein shares her insight on low vision as an Associate Professor of Ophthalmology and the Chief of the Low Vision and Rehabilitation Department at Wilmer Johns Hopkins.
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. Steve Holsonback is our media engineer and...2023-04-1745 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#9 Wolfram Syndrome with Stephanie Gebel SnowStephanie Gebel Snow shares her perspective as a patient advocate creating the Snow Foundation for Wolfram Syndrome research. Check out The Snow Foundation.
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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen...2023-04-0338 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#8 Oculoplastic Surgery with Dr. Shannath MerbsOculoplastic surgeon Shannath Merbs shares her expertise in cosmetic and reconstructive surgery of the eyelids, orbit, and face.
Dr. Merbs is a Professor of ophthalmology and Visual Science at the University of Maryland, School of Medicine. Dr. Merbs is an Oculoplastic surgeon specializing in cosmetic and reconstructive surgery of the eyelids, orbit and face.
The discussion in this episode is in two parts. In the first half of the conversation we focus on Dr. Merbs’s surgical practice in Baltimore. The second part we dive into her research and he...2023-03-2026 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#7 Prenatal and Cancer Genetic Testing with Karen Grinzaid
JScreen Genetic Counselor Karen Grinzaid explains the options for genetic testing for cancer risk and the chance to have a biological child with a genetic condition.
Karen A. Grinzaid is an Assistant Professor of Human Genetics and the Executive Director of JScreen, a national online genetic disease screening program based out of Emory University School of Medicine. She has extensive experience in prenatal, pediatric and adult genetic counseling and testing, as well as clinical care and clinical research. Karen is proud of JScreen’s success in helping couples across the United States have he...2023-03-0626 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#6 Glaucoma with Dr. Mona KaleemDr. Mona Kaleem is an associate professor of ophthalmology at Wilmer Johns Hopkins in North Bethesda, Maryland.
In this episode Dr. Kaleem shares her expertise about risk factors, screening, diagnosis, resources, development, and treatment for glaucoma. Dr. Kaleem shares resources including her own podcast, Diagnosis Glaucoma and Sigtwise, a project designed by Dr. Kaleem to evaluate eye clinics for accessibility.
In This Episode We Discuss:
Types of glaucoma
Risk factors to develop glaucoma
Diagnosis of glaucoma
Treatments for glaucoma
...2023-02-2024 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#5 Wolfram Syndrome with Dr. Sarah GladstoneDr. Sarah Gladstone joins the show to share her perspective of Wolfram Syndrome being a parent of a child with the condition and a physician.
Sarah Gladstone (She/Her) is a pediatrician who completed her MD at Vanderbilt University and pediatric residency at The Children's Hospital of Boston prior to practicing in primary care for 15 years. She began working with WS researchers and parents to facilitate communication and help find a treatment for WS after her daughter was diagnosed with WFS1-Related Disorder in 2016. Sarah started the Unravel Wolfram Syndrome Fund to support WS research by Dr...2023-02-0738 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#4 Genetic Counseling for Rare Diseases with Kira DineenGenetic Counselor, and our podcast co-producer, Kira Dineen shares her insight on when to pursue genetic counseling and how genetic counselors can help people in the rare disease community.
Co-producer Kira Dineen, MS, LCGC, CG(ASCP)CM has over a decade of podcast experience fueled by a passion for science communication. She has hosted and produced 7 podcasts. Her multi-award winning podcast, "DNA Today", is in the top 1% of podcasts globally. She was accepted into The Podcast Academy and has served as a Blue Ribbon Panelist for The Ambies. Kira received her Diagnostic Genetic Bachelor’s...2023-01-2330 min
DNA Today: A Genetics Podcast#219 It Happened To Me Podcast: Genetic Counselors for Rare DiseasesA new year means a new podcast! We are thrilled to announce that our host, Kira Dineen, is a co-producer of a new rare disease and medical challenges podcast called, It Happened To Me. In celebration of the launch we wanted to share an upcoming episode of the podcast where the hosts Cathy Gildenhorn and Beth Glassman interviewed Kira Dineen. There will also be another episode on the show where they flip roles and Kira interviews Cathy and Beth about their patient advocacy and stories. Hope you enjoy this ep...2023-01-1300 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#3 Wolfram Syndrome with Cathy GildenhornBeth Glassman interviews her co-host Cathy Gildenhorn about her rare disease, Wolfram Syndrome.
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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-producer. Ashlyn Enokian is our gr...2023-01-0916 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#2 Glaucoma and Low Vision with Beth GlassmanCathy Gildenhorn interviews her co-host Beth Glassman about her journey with glaucoma and low vision.
Co-host Beth Ourisman Glassman is a third-generation Washingtonian with a deep interest in health care. She is a trustee of the Sibley Memorial Hospital Foundation in Washington and co-chair of A Woman’s Journey for the National Capital Area, the 27-year-old women’s health program established by Johns Hopkins Medicine. Beth is passionate about empowering women to make the best health care decisions for themselves and their families. Having experienced health challenges herself, she believes that the power of conn...2023-01-0916 min
It Happened To Me: A Rare Disease and Medical Challenges Podcast#1 Inspiration to Launch “It Happened To Me”o-host Cathy Zacks Gildenhorn 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. Cathy also served as presidential appointee to the United States Holocaust Memorial Council and worked on the opening of the museum. Currently, Cathy serves as editor in chief and designated spokesperson for the book, Redefining Moments: End of Life Stories for Better Living. Several years ago Cathy was diagnosed with a rare, genetic disease. Since then she has passionately dedicated her life to creating...2023-01-0921 min
It Happened To Me: A Rare Disease and Medical Challenges PodcastTrailer: It Happened To MeWe are thrilled to announce our brand new podcast, It Happened To Me, I’m not alone and neither are you. This show explores rare diseases and medical challenges.
Our mission is to support you, our listeners, by creating community as you confront the toughest challenges in life. We aspire to help you overcome limitations and live a full and satisfying life.
Our hosts are Cathy Gildenhorn and Beth Glassman who draw from their own health challenges while interviewing guests to capture their stories and expertise.
...2022-12-3102 min