Cystic Fibrosis Podcast 174: Rare Disease Series featuring Duchenne Muscular Dystrophy

Cystic fibrosis is a part of a small but special community that includes around 7,000 rare disease populations. To be classified as a rare disease, the disorder must affect less than 200,000 Americans at any given time. By the strictest of definitions, cystic fibrosis is one of these diseases. Because of the extremely small populations, many in these communities find that it is helpful to “reach across the isle,” so to speak, in order to connect with others who suffer from similarly rarely known and talked about diseases.

With that in mind, Jerry interviewed Jonathan, who lives with Duchenne muscular dystrophy, a rare inherited disorder of progressive muscular weakness that is most typically found in males and affects only about 20,000 people. He is 23-years-old, recently graduated from Nazareth College, is an Eagle Scout, volunteers at Rochester Zoo, and does not allow his disorder to get in the way of living his life and participating in clinical trials in order to help find a cure.

This video podcast was made possible through a grant from PTC Therapeutics to the Boomer Esiason Foundation.