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

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 arti...

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...

Dr. 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 H...

Stephanie 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 Happene...

Oculoplastic 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 t...

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...

Dr. 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 f...

Dr. 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 faci...

Genetic 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, " D...

Beth 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 Gla...

Cathy 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 J...

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 designat...

We 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 G...