#21 Wolfram Syndrome with Parent Pat Gibilisco
Pat Gibilisco is Patient Advocacy Liaison for the Snow Foundation for Wolfram Syndrome research. In 2021, her daughter Lauren died from Wolfram Syndrome in her mid-30s.
#13 Medical Challenges Toolkit with Kimberly Callinan
In this podcast episode, we provide a toolkit for medical challenges throughout life. We focus on helping listeners become empowered consumers. Consumers who, when faced with a serious diagnosis or medical challenge, learn to ask the right questions and consider treatment options.
#12 Bardet Biedl Syndrome with The Alms (Part 2)
In this podcast episode, 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.
#11 Bardet Biedl Syndrome with The Alms (Part 1)
In this podcast episode, 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.
#10 Low Vision with Dr. Judith Goldstein
In this 30 minute podcast episode, 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.
#9 Wolfram Syndrome with Stephanie Gebel Snow
Stephanie Gebel Snow shares her perspective as a patient advocate creating the Snow Foundation for Wolfram Syndrome research.