Charley’s Fund
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.
There is an Urgency to Act Now!
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.
Duchenne Muscular Dystrophy
Duchenne muscular dystrophy is the most common fatal genetic disorder to affect children around the world. Children with DMD cannot produce dystrophin, a protein necessary for muscle strength and function. As a result, every skeletal muscle in the body deteriorates. Although Duchenne is the most common fatal genetic disorder to affect children, there is no cure.
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News From Charley’s Fund
For the past seven years, with your help we have been funding medical research in the hope of finding a treatment that could save Charley’s life and the lives of thousands of children like him who have been struck by Duchenne muscular dystrophy. Now, we have arrived at a crucial turning point. Human clinical trials are finally underway. Additional trials will startin 2012 and 2013 as long as we continue to fund the development of these promising medications.
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Since the founding of Matt’s Promise and our very first event in 2006 Caroline has contributed tirelessly to our work and cause. She is always there to help handle the details. Her efforts support our annual event, help us to keep the day to day operations flowing smoothly and she volunteers her time and organizational skills to all of our events and activities. Caroline says, “It has been so fulfilling to be able to work with the team at Matt’s Promise. I have never been directly involved with a charity organization before so this has been a wonderful learning experience. I know Benjy and Tracy Seckler personally and am grateful to be able to contribute to finding a treatment or cure for Duchenne muscular dystrophy.”
