Matt’s Promise is dedicated to making a difference in the lives of young people affected by terminal illnesses. Our commitment, through select funding of treatment, research, education, and support programs, is to advance the fight against these diseases and to assure the most comprehensive, innovative, and compassionate care.
The cornerstone project of Matt’s Promise is research for the treatment and cure of Duchenne muscular dystrophy (DMD). While receiving treatment for his own terminal disease, Matt learned that the son of his childhood best friend was diagnosed with this dreadful and devastating disease. The news hit Matt hard, and he was determined to do all that he could to help Charley and other young people receive the best medical care and emotional support available and to fund research to find a cure.
The disease, which affects approximately 100,000 boys, is traced to a genetic mutation that results in the degeneration of the muscles. 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. Matt’s Promise, in partnership with Charley’s Fund, has directed funds into the hands of researchers who have the best shot at developing a treatment or cure for Duchenne muscular dystrophy.
For Charley’s Fund, the urgency is real. Charley Seckler turned 11 in November 2011. He cannot wait for the medical establishment to lumber through the typical 20+ year process to bring a new drug to market. By the time Charley is in his late teens or early 20s, he will have lost the ability to walk, then to breathe. And then his heart will stop pumping. But it doesn’t have to play out that way for Charley and the thousands of other children like him. Why now? Over the past two years, scientists have made significant advances in molecular medicine and gene therapy. Major biotech and pharmaceutical companies have discovered that bringing drugs to market for orphan diseases like Duchenne can be profitable. This is the right moment for a big, final push to extinguish this cruel disease. We can’t let it slip away or wait for a more robust economy. We must seize the opportunity now.