Center for Duchenne Muscular Dystrophy Care Opens at Mass. General

Dr. Brian Tseng said he has been gearing up to push the frontiers of Duchenne muscular dystrophy research and clinical care for some time.

His mentors in medicine, however, "encouraged me not to go down this path, telling me I couldn't do anything for these boys, and it was a dead-end career."

His mentors have been proved wrong, Tseng said Thursday at the opening celebration for the Jett Program for Pediatric Neuromuscular Disorders, a collaboration between the Pembroke-based Jett Foundation and Massachusetts General Hospital for Children.

Tseng is now the director of the program, the first in the Northeast devoted to an often-overlooked genetic disorder that causes boys to lose muscle function and independence. People with Duchenne muscular dystrophy have a life expectancy of about 20 years.

"The standard of care in 2008 is not good enough, so we need to push it further," Tseng said. "What motivates all of us here is the belief that these kids and adults deserve better. They deserve the experts to help them live healthier, have mobility for longer, live longer, and have a future."

Massachusetts General Hospital President Peter Slavin said that while the Jett program will provide "the highest-quality care possible" for patients with neuromuscular diseases, "it will also advance research and education for these disorders, thereby offering hope for the children and their families who must live with these diseases that rob young children and young people of a carefree childhood."

For Christine McSherry, who founded the Jett Foundation in 2001 after the diagnosis of her son Jarrett (nicknamed Jett), Thursday marked "the beginning of changed outcomes for boys diagnosed with Duchenne."

"Our goal at the program is to keep every one of our patients healthy enough to age out of our clinic, and to go on to MGH's neuromuscular adult clinic," she said.

McSherry teared up when speaking about Jett, who is now 12.

"One day, perhaps when my son Jett has children of his own, we will have cured this disease and put ourselves out of business - a day I live for," she said.

The multidisciplinary clinic, which brings together nurses and doctors from pulmonary medicine, cardiac medicine and genetics, began serving patients in December.

It emphasizes treatment and medical care on Tuesdays, when patients can see all of their doctors.

"It is a godsend for these families that they can schedule four to seven appointments in one day and have coordinated care, and multidisciplinary specialists together," Tseng said.

Nicholas Larkin, 16, a Danvers High School sophomore, said being able to see various doctors on the same day has made his treatment easier.

"It gives me a little more hope to find a cure, or (have) more research for the disease," he said of the clinic. "That's a good thing."

Edward B. Colby may be reached at ecolby (at) ledger.com.

www.jettfoundation.org