This is the first episode of FSH Society radio. First you ask, "What is FSHD?" It is Facioscapulohumeral muscular dystrophy (FSHD). FSHD gets its name because the progressive loss of skeletal muscle is usually noticeable across facial (facio), back (scapula), and upper arm (humeral) muscles. This is a progressive disease and it has no cure or treatment...yet. In each episode, I invite you to come with me and share in my journey of not only my personal battle against this disease, but the story of the hundreds of thousands of others affected by it.
This episode I welcome the COO and executive director of the FSH Society. We talk about the science and facts of FSHD. We discuss the beginning of the FSH Society and the future. June and I explore the race for a cure and with the help of the FSH Society. June talks about the role that the FSH Society plays in helping people connect that are looking for support. I will share my personal story of my fight with FSHD and invite you to do the same. I also inform you of some current news and events in the FSHD world.