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October 2008 |
SPOTLIGHT ON... In the furtherance of our enthusiastic commitment to serving the charities we assist, Schiff Hardin's Tax-Exempt Organizations practice is proud to present our Philanthropic Spotlight. Each month, we will turn over the microphone to one of the many organizations we work with so that you can learn about some wonderful work that is being done to make the world a better place. With that, we are proud to introduce you to Charley's Fund.
In July of 2004, Tracy and Benjamin Seckler were enjoying a hectic but joyous life with two little boys and a baby girl on the way. Having recently moved from Boston to the bucolic Berkshires, they were constantly on the go, skiing, hiking, renovating an old farmhouse, and chasing after the two toddlers. Then a dart fell from the sky, and one blood test changed the Secklers' lives forever. Their son Charley (three years old at the time) was diagnosed with Duchenne muscular dystrophy, a fatal childhood disease that destroys every muscle in the body. Although DMD is the most common fatal genetic disease to affect children around the world, doctors informed the Secklers that there was no effective treatment or cure. The prognosis is devastating: boys with DMD lose their ability to walk by adolescence and subsequently lose all muscle function. The disease is 100% fatal, with most boys dying in their late teens or early 20s. At three years old, to the casual observer Charley was just like every other kid, climbing on the playground and bombing down the ski trails. But the Secklers knew the clock was ticking, so they set to work immediately. Benjamin, a physician in private practice, relentlessly researched the most recent scientific advances to determine if they had a realistic chance of saving Charley's life. When it became clear that a treatment was within reach, the Secklers determined to do everything in their power to fast-track the science so it would ripen in time to help their son and thousands of young boys like him. Fast forward four years to October 2008, and the Secklers have directed more than $13 million into DMD medical research through their 501 (c)(3) charity called Charley's Fund (www.charleysfund.org). The foundation plays a key role in coordinating scientific efforts around the globe and expediting the research on several fronts. They are funding research projects at academic institutions as well as biotechnology companies that are developing therapies for DMD. The Director of Research and Strategic Planning, whom Tracy and Benjamin lured away from a biotechnology company, is the only PhD-level scientist in the world employed by a nonprofit foundation whose sole focus is to expedite a cure for this murderous disease. The advances are extremely encouraging. Three pivotal clinical trials are underway, one of which Charley's Fund was instrumental in financing. Several more clinical trials are slated to begin in the next 12 to 18 months with significant support from Charley's Fund. Meanwhile, Charley will turn eight in November. Although he has slowed down a bit, he is still walking, playing dodge ball, and smashing the wiffleball over the fence. Charley's Fund has had a tangible impact on the medical research while keeping administrative and fundraising costs extremely low (6%), thanks in large part to the efforts of Schiff Hardin. Together we are giving boys with this dreadful disease a fighting chance at a better future. For more information, visit www.charleysfund.org. RECENT PUBLICATIONS
ABOUT SCHIFF HARDIN LLP Schiff Hardin LLP is enthusiastically committed to serving the legal needs of tax-exempt organizations, matched by significant experience and practice capabilities in this area. Our attorneys provide comprehensive counsel to a wide array of public and private philanthropic, health care, medical and scientific research, housing, neighborhood redevelopment, cultural, artistic, civic, college and educational, and religious organizations, as well as social welfare organizations, trade associations and business leagues, business and housing cooperatives, and professional fundraisers.  |
