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LISTEN: Duchenne Program at UMass Medical School provides care, advances research

By Sarah Willey

UMass Medical School Communications

August 26, 2019

It’s been one year since UMass Medical School launched the Duchenne Program at UMass Medical School, an interdisciplinary program devoted to boys and young men with the most common and aggressive form of muscular dystrophy, Duchenne muscular dystrophy.

In a new Voices of UMassMed podcast, Brenda Wong, MD, professor of pediatrics and founding director of the program, explains how it is devoted to providing the best possible care to the Duchenne community while advancing research for better outcomes and therapies.

“We are here to provide that journey of hope together with the families so that the patients do well clinically, with the best outcomes, and at the same time, we’re on this journey to find new cures and we are always looking toward the light at the end of the tunnel,” said Dr. Wong.

Also featured in the podcast is Tracy Seckler, co-founder and CEO of Charley’s Fund, the Massachusetts-based nonprofit organization that helped establish the Duchenne Program at UMMS through a generous $6 million pledge. Charley’s Fund is named after Seckler’s son, Charley, who has DMD. Knowing firsthand of the many struggles parents experience when their child is diagnosed with DMD, she wanted to build a comprehensive program to better support families.

“It’s a real challenge to find a team of doctors who are working together, and then having a quarterback who will interface with the family to really guide you, taking into account all the different areas of expertise,” Seckler explained.

Listen to the Voices of UMassMed podcast: You can also subscribe to the podcast and listen on SoundCloud and iTunes.