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

In 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 CH...

In 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 recommen...

Despite 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 m...

In 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...

In 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 al...

A 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...

In 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...

In 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...

In 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...

We 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 synthet...

Two 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...

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 Patholog...

Pancreatic 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...

We 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 su...

Dr. 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...

Carly 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, a...

We 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 Founda...

In 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...

Corinne 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 Re...

In 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, Misso...

In 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 psych...

At 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 wr...

We 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, wh...

We 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...

Kimberly 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 e...