Charley’s Fund is named for our son who, to the casual observer, is simply a quirky little kid with irresistible curls and a mischievous sense of humor. People who meet Charley for the first time often comment, “You’ve certainly got your hands full!” They are no doubt referring to Charley’s penchant for adventure: he climbs precariously high at the playground, “hides” in places where he could really get lost (like the supermarket), and loves to fast forward to the scariest part of the movie.
Charley’s devilish smile belies what is going on inside his body, for his muscles are deteriorating at an alarming pace. Unless a cure or treatment for Duchenne Muscular Dystrophy is found, Charley will lose his ability to walk by adolescence, and subsequently lose all muscle function. Like all boys with Duchenne, he will die from respiratory or heart failure in his late teens or early twenties.
Perhaps the hardest thing about having a child with a fatal disease is knowing that one day our carefree boy will realize that he can’t do the things he loves most – chase his older brother Sammy, swing the baseball bat over and over until he hits the ball out of the yard, and smother his baby sister with slightly-too-aggressive kisses and hugs. Our goal is to stop this disease – or slow it dramatically – so that it doesn’t have a chance to knock Charley off his feet or wipe that kooky grin off his face.
Charley was diagnosed in July of 2004, on a day that shattered our charmed family life. With one blood test, our whole lives changed. No more talking late into the night about who the new baby might look like, or if the boys would have trouble adjusting to her presence. Almost immediately, we revved into high gear on two fronts: getting Charley the best possible medical care and finding a cure in time to save his life.
Charley’s Fund was incorporated four months after the diagnosis. Right away, we met with the leading researchers and physicians who are pushing the envelope of DMD treatment. These experts agree that for the first time in the history of this disease, the time is ripe for a major breakthrough. Over the past two years, scientists have made significant advances in molecular medicine and gene therapy. Major biotech and pharmaceutical companies are now investing in research that will bring DMD therapies to the market. Due to intensified lobbying efforts, more federal funds are being spent on research for a cure.
We need your help to take full advantage of this momentum. Thanks to the generosity of many people – from family members to corporations to sympathizers we have never met – we have directed more than $14 million to support research for a treatment or cure. We hope you will join us in our effort to eradicate Duchenne.
Please explore our website to learn more about the disease and our fundraising efforts, and of course to donate on line! Thank you for your interest in Charley’s Fund.
With sincere gratitude,
Tracy and Benjamin Seckler
Charley’s Mom and Dad