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

Apr 14 2024 4

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

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 [email protected]. 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 ...

Subscribe on Podcast Addict

#34 Bloom Syndrome with The Yasbins

Apr 14 2024 31 mins

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 go

#33 Tay-Sachs and Grief with Myra Sack

Apr 01 2024 33 mins

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 p

#32 Tay-Sachs and Carrier Screening with Dr. Matthew Goldstein

Mar 18 2024 65 mins

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-clinic

#31 Blood Transfusion Therapy with Lori Harada & Carly Newton

Mar 04 2024 39 mins

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 educ

#30 Rare Disease Advocacy with Wes Michael

Feb 19 2024 36 mins

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 Ra

#29 Exploring the Potential of Artificial Corneas with Dr. Esen Akpek

Feb 05 2024 23 mins

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 corn

#28 Dry Eye with Dr. Esen Akpek

Jan 15 2024 35 mins

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 developi

#27 Prevention of Blindness Society

Jan 01 2024 37 mins

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 progr

#26 Wolfram Syndrome Expertise from Dr. Fumihiko Urano

Dec 18 2023 33 mins

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

#25 Pancreatic Cancer with Patient Advocate Leslie Waldman

Dec 04 2023 44 mins

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 diag