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Duchenne Program’s Blog

How The Duchenne Program Came to Be — A Note from Tracy and Benjamin Seckler, Charley’s Fund Co-Founders

Thursday, July 04, 2019
The Duchenne Program’s Founding Director Dr. Brenda Wong with Charley and Tracy Seckler.

The Duchenne Program’s Founding Director Dr. Brenda Wong with Charley and Tracy Seckler.

Our son Charley was diagnosed with Duchenne muscular dystrophy in August 2004, when he was three years old. We were crushed to learn that Charley has Duchenne, an aggressive and progressive muscle wasting disease that is 100 percent fatal. But at least we felt assured that he would have nearby access to the best medical care available, and opportunities to participate in clinical trials for new medicines. Our hometown of Alford, Massachusetts is just a two-hour drive from both New York City and Boston, two cities known as hubs for medical care and innovation.

To our surprise and dismay, we found ourselves getting on an airplane each year for Charley’s care – no place nearby offered the comprehensive, interdisciplinary care he needed. And when a clinical trial opportunity arose, we had to drag Charley to the airport and fly to yet another city -- this time once a week -- to participate. This was a major blow to our quality of life, but even so we knew we were in the lucky few who had the time and resources to travel for care and clinical trials.

As the co-founders of Charley’s Fund, an organization that has directed nearly $45 million into medical research since 2004, we’ve gotten pretty good at identifying problems in the field of DMD research and devising and implementing solutions. In 2015, Charley’s Fund undertook a multi-year due diligence investigation to determine what it would take to build a world-class DMD clinic and research site in the Northeast. We researched best practices, explored the challenges and opportunities that launching a new clinic would present, searched for a host site that would serve as a partner in innovation, and identified a visionary who would serve as the founding clinic director. After years of careful research and planning, The Duchenne Program officially launched in July 2018.

We are honored and excited to be working closely with Dr. Wong’s team and UMass leadership to build The Duchenne Program over the coming years. We are committed to creating a true hub for Duchenne, a place where knowledge is discovered, created, and shared to help all people affected by Duchenne live the longest, fullest, best lives they can.