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At 21, Hawken Miller certainly doesn’t look like a typical Duchenne muscular dystrophy patient. For one thing, unlike most boys and young men with Duchenne, Hawken isn’t obese — or even overweight — even though he’s been on steroids for years. That’s because he eats a balanced, high-protein diet with generous…

Until her son, Will, was diagnosed with Duchenne muscular dystrophy as a 7-year-old, speech pathologist Tiffany Cook had never heard of the disease. Today, it’s literally her full-time job. As family resource manager with the nonprofit organization CureDuchenne, Cook — who works from her home in Dallas — helps…

The University of Virginia (UVA) Children’s Hospital has been named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), making it the 22nd such center recognized by the patient advocacy group for the quality and comprehensiveness of its neuromuscular program. UVA’s hospital is also the first CDCC with a prominent…

For nearly half a year, Brenda Wong, MD, has led New England’s first and only interdisciplinary clinic devoted exclusively to boys and young men with Duchenne muscular dystrophy (DMD). The Duchenne Program at UMass Memorial Medical Center is located in Worcester, a 45-minute drive west of Boston. The clinic,…

Like many mothers of boys with muscular dystrophy, Deborah Hall hasn’t had an easy life. Hall, the daughter of a chemical engineer and a stay-at-home mom, was one of six siblings growing up in Boaz, West Virginia. When her younger brother, John, was 3 years old, doctors diagnosed him with…