While receiving treatment for his own terminal disease, Matt learned that the son of his childhood best friend “Charley” was diagnosed with Duchenne Muscular Dystrophy (DMD). This dreadful and devastating disease affects approximately 100,000 boys and is traced to a genetic mutation that results in the degeneration of the muscles and is 100% fatal. “Unless a cure or treatment was found,” Matt’s best friend and Charley’s parents were told, “Charley will lose his ability to walk by adolescence and subsequently lose all muscle function. He will die from respiratory or heart failure in his late teens or early twenties.”Typically, by the time a child with DMD enters his teens, he uses a wheelchair, and in most cases, by the time he is twenty, he dies from respiratory or heart failure.
Charley’s father Benjy, a Harvard man who went on to get his medical degree at the Mount Sinai School Of Medicine Of New York University, and his Mother, Tracy a Harvard graduate herself, were not the type to sit idle. As soon as they learned of Charley’s diagnosis they immediately launched Charley’s Fund. Their goal was to stop this disease – or slow it dramatically – so that it wouldn’t have a chance to knock Charley off his feet.
Incredibly, over the past ten years Charley’s Fund has directed more than $30 million to medical research and drug development. They have grown from a literal “mom and pop” effort into an organization that is having a global impact on the pace of therapeutics development for Duchenne muscular dystrophy.
The progress has been historic, but they are not celebrating until they finish what they started. Duchenne still causes terrible suffering and death for many thousands of children around the world. Each day children with DMD lose something that most people are lucky enough to take for granted: the ability to jump, to hold a pencil, to hug, to breathe. Each day that passes is a day too long in this fight.
Matt’s Promise, is proud to be in partnership with Charley’s Fund, and help direct funds into the hands of researchers who have the best shot at developing a treatment or cure for Duchenne muscular dystrophy.