Region's First Duchenne Muscular Dystrophy Center Celebrates Opening

Jett Foundation and MassGeneral Hospital for Children Collaborate

In June, the Jett Program for Pediatric Neuromuscular Disorders (JPPND), the Northeast's first multi-disciplinary clinic specializing in Duchenne Muscular Dystrophy (DMD) and other pediatric neuromuscular disorders, celebrated its grand opening at Massachusetts General Hospital (MGH).

A collaboration between the Jett Foundation and MassGeneral Hospital for Children, the program represents a huge milestone for the Pembroke, MA-based foundation and its president Christine McSherry, whose 12-year-old son Jett has DMD.

"For the last 40 years, many of our DMD boys have died from just routine care," McSherry told a standing-room only crowd at the grand opening. "From the moment you walk into our clinic, you know that this is a place of hope and solutions, where proactive, aggressive care - delivered with compassion - is the name of the game."

The JPPND offers state-of-the art, coordinated care through a team of experts who specialize in the various body systems affected by these diseases. DMD is a fatal genetic disorder that affects only boys, causing the loss of muscle function and independence. Many boys with Duchenne use wheelchairs by age 12 and often die in their 20s. Although there is no cure for DMD, the goal of the program is to keep this generation of children healthy enough to be around for the day that a cure is discovered.

Clinic patient Gordon Sterling, who at 45 is a veritable grandfather in the Duchenne community, spoke about how his parents had to learn on their own many of the things that have prolonged his life. "I'm pleased to know that this generation of parents and children have the benefit of this clinic to help them face the challenges of their future,"he told the audience in a voice softened by the ventilator that helps him breathe. "This program will provide the highest quality care for children affected by Duchenne Muscular Dystrophy and other complex disorders," said MGH president Peter Slavin. "It also will advance research and education of these disorders, thereby offering hope for the children and their families who must live with diseases that rob young people of a carefree childhood."

McSherry, who with her husband Stephen founded the Jett Foundation in 2001 to raise money for DMD treatments and a cure, was instrumental in the creation of the clinic. She works as the program's family advocate, offering guidance, support and various types of assistance, including help negotiating with schools for appropriate services. Nationally renowned neurologist and researcher Brian Tseng, MD, PhD, is the clinic's director.

"What motivates all of us involved with this program is the belief that these kids and young people deserve better," said Dr. Tseng. "They deserve care that will keep them healthier, more mobile and more independent far longer than anyone ever thought possible. They deserve to have long futures. And they deserve to have the hope of a cure some day."

About the Jett Foundation
Founded by Christine and Stephen McSherry in 2001, the Jett Foundation is a non-profit organization that raises money for Duchenne Muscular Dystrophy (DMD) research; educates caregivers and the public about the disease; and runs a comprehensive DMD clinic in collaboration with MassGeneral Hospital for Children - the Jett Program for Pediatric Neuromuscular Disorders.