“For any story of changing the world is always the story of many.” — Judith Heumann Tomorrow, June 20, is World FSHD Awareness Day, dedicated to facioscapulohumeral muscular dystrophy, a disease that etched itself into my DNA and, since I was 7, completely changed the trajectory of my life. Next month, on July 26, the . . .
An older gentleman came up to me once. I had just been on TV for the Jerry Lewis MDA Labor Day Telethon talking about how facioscalpulohumeral muscular dystrophy (FSHD) affects my facial muscles and my ability to really smile and show my teeth. The gentleman put his hand on my shoulder and said with good . . .
When getting acquainted with something new, you can toe-test or you can jump. As for my newly appointed MDA National Ambassador role, attending the inaugural MDA Clinical & Scientific Conference was, no doubt, the best kind of canon ball. Though I have been around the scene locally for decades, this was my first time at . . .