Furlong receives college’s top award

Patricia Furlong, president of Parent Project Muscular Dystrophy, received the Mase Leadership Award. Photo by Kristen Bartlett Grace.

Patricia Furlong, founding president and CEO of Parent Project Muscular Dystrophy, has been awarded the College of Public Health and Health Professions’ Darrel J. Mase Leadership Award, the highest award presented by the college. She was recognized at the college’s convocation ceremony April 29.

Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States that focuses solely on Duchenne muscular dystrophy. Duchenne is the most common fatal, genetic disorder and it affects about one of every 3,500 to 5,000 boys born in the United States, according to the Centers for Disease Control and Prevention.  

After her two sons were diagnosed with Duchenne, Furlong, along with other parents of boys with Duchenne, founded PPMD to accelerate research, educate, lobby Congress and advocate for better care.

Furlong is considered one of the foremost authorities on Duchenne in the world. She has served on the Board of Directors of the National Organization for Rare Disorders and the Institute of Medicine’s Committee on Pediatric Studies. Last year, she was featured in The New Yorker Magazine’s World Changers issue and was named a Health Hero by WebMD.

Furlong and PPMD played a critical role in the passage of the Muscular Dystrophy Community Assistance, Research and Education Act, which allocates federal funding for muscular dystrophy research. Since 2001, $463 million has been leveraged for muscular dystrophy research and education, with $192 million of that going directly to Duchenne research.

Krista Vandenborne, Ph.D., chair of the college’s department of physical therapy and associate research dean, received funding from PPMD to support her studies of the use of magnetic resonance imaging for tracking the progression of Duchenne. That work led to the award of a $7.5 million National Institutes of Health grant last year to continue her studies.

At convocation Furlong addressed the graduating students in the audience: “I want to tell you from PPMD and from every patient that you meet and every person in pain, we will be thankful for what you give to us, thankful for what you can do for us and we’ll always remember you. I hope you remember us.”

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