FSHD Society Western Pa. Chapter Prepares For “Drum & Roll”

FSHD Society Western Pennsylvania Chapter Members Prepare to Rock ‘n Roll for Second Annual Drum roll to cure FSHD an event.

Scheduled from 1 to 3 p.m. on November 5 at the Andrew Carnegie Free Library and Music Hall in Carnegie, the event will feature performances of African music and dance, followed by an interactive dance session choreographed especially for people in a wheelchair.

Yamosa Camarathe director of the African Music & Dance Ensemble at the University of Pittsburgh, will lead the celebration open to patients, their supporters and the public.

The FSHD Company is a national organization that provides support for people with Facioscapulohumeral Muscular Dystrophy, a genetic condition that causes muscle weakness and leaves approximately 20% of those affected in a wheelchair by the age of 50.

The society also raises funds and advocates for research into potential treatments and cures.

“While there is no treatment for FSHD right now, there will be very soon,” said Anna Gilmore, regional director for the Maryland-based organization. “Research has gained such momentum in recent years and there is so much going on. We have one treatment currently in clinical trial and two more that have been announced that will start either at the end of this year or next year.

The FSHD Society, founded in 1991 by two patients, is the world’s largest grassroots network of people with FSH muscular dystrophy, their families and research activists. It has dozens of volunteer-run chapters in the United States and Canada, as well as affiliates around the world.

“For much of our history, the company primarily funded academic research, and we still do,” Gilmore said. “But now we’re also doing a lot of other things, including starting our own projects that help accelerate progress in clinical trials and building a community of people with FSHD for what we call an army of activists.

“We know that one of the best ways to move a drug from research to actual therapeutic development is through collective intent, so we talk a lot about bringing the community together to make sure their voice is heard by regulators and companies. pharmaceuticals,” she said.

“We are a very small organization, however, we have amazing volunteer leaders across the country who are setting up educational resources, community events, support rallies and fundraisers in their area.”

In western Pennsylvania, that volunteer leader is Mark Christman of Whitehall, who founded the local chapter.

A retired lawyer, Christman was diagnosed with the disease in 1977 at the age of 16. The first time he met another person with FSHD was in 2014, when he attended an FSHD Connect conference in Boston.

“It’s long,” Christman said. “It gave me energy to think about the future, to find a cure, to help other people who have been through the same things as you.”

Achievable goal

FSHD results from a genetic defect that causes the overproduction of a protein that kills muscle cells. It affects around one in 8,333 people worldwide – more than 870,000 worldwide.

Its severity can vary widely, from no outward symptoms, immobility of the legs and arms, to hearing loss and blindness. It usually affects the face, shoulders and upper arms and, as it progresses, can affect the lower extremities.

“The company believes it is an achievable goal to find a cure for this disease, or therapy, by 2025,” Christman said. “It doesn’t mean a cure, but there are drugs currently in development that would stop the progression of the disease.”

That’s why fundraisers like Drum & Roll, which raised $32,000 in its inaugural year, are so important, Christman said.

“One of the biggest hurdles is showing that a treatment works,” Christman said. “If you have a progressive disease, and sometimes it doesn’t progress at all for long periods of time, how do you measure the disease or if a treatment is working?”

A drug’s effectiveness must be proven to gain approval for use from the US Food and Drug Administration, he said.

“The society is working hard with pharmaceutical companies to find ways to demonstrate the effects of treatments,” he said.

Complementing the work of the national organization, local chapters are important in creating a network of support for FSHD patients and their families.

“It’s really nice to be able to talk to other people with the affliction, if you want, and how they’re coping with the disease and to support each other,” said Roy Stang, an engineer at the retirement of Sarver who was diagnosed with FSHD. about two years ago, at the age of 62.

With symptoms including weakness in his arms and the inability to lift them above his head, Stang was initially diagnosed with spinal stenosis. After spinal fusion surgery and visits to several neurologists, he learned that he did, in fact, have FSHD.

“Looking back, I had some signs of the disease,” Stang said. “I suspect my mum may have had it. I see some traits she had, so I think that was the culprit. Like me, there are probably a lot of people who wonder about their symptoms. In retrospect, my symptoms were related to FSHD. Luckily, I lived a fairly normal existence into late adulthood before I knew what was going on.

For Stang and his wife, Deanna, the company has been “a tremendous resource” of information, support and community.

“It’s very useful for spouses. Deanna had to compensate for things that I can no longer do,” he said.

One-of-a-kind event

In addition to his work with the FSHD Society Chapter, Christman has served on the Whitehall Zoning Board and is a board member of Trib Total Media.

He also took courses at the Osher Lifelong Learning Institute at Carnegie Mellon University. It was there that he met Camara, and the idea for Drum & Roll was born.

Camara immigrated to the United States in 1995 from his native Guinea, West Africa. At that time, he was already the youngest lead drummer in The Ballets Africans, the national dance company of Guinea. He taught at Yale University for over 10 years and traveled the country teaching, performing and choreographing for numerous music and dance ensembles. In addition to teaching at Pitt and CMU, Camara also teaches at Point Park University.

“(Drum & Roll) is one of a kind and totally Mark’s brainchild,” Gilmore said. “He convinced (Camara) to come and do this show for us and give a little dance class adaptable to people who use mobility devices.

“It’s an inclusive event, totally unlike anything you’ll find anywhere else. It’s just very special and it’s really a lot of fun,” she said.

In addition to dancing and drumming, there will be a cookie table and raffles. The chapter will offer three sets of four tickets each for the Pittsburgh Penguins’ Dec. 3 game against the St. Louis Blues, with seating in the Trib Total Media Suite at PPG Paints Arena.

“All you have to do to be entered into the raffle is show up at our event,” Christman said.

People who donate or raise at least $100 for the society will have a chance to win an authentic African djembe.

While the FSHD Society Western Pennsylvania chapter covers the State College state westward, its membership is small, Christman said.

There are three or four core members who attend all meetings, which are usually held quarterly and include various educational, sharing, and supportive or fun activities.

“We have about eight to 10 other people who come to a meeting once in a while,” Christman said. “Because it’s a rare condition, we just don’t have enough of us to have a big chapter.

“We’re basically talking about the western half of the state and we know about 40 people who have it. Of course, there’s probably double that number that the company isn’t aware of,” he said. “For a lot of people it’s a private thing or they don’t feel like that kind of support is something they care about.”

With these numbers, Christman is proud of what the first Drum & Roll achieved.

“Even though so few of us actively participate, we have done a very good job; and I hope to duplicate that effort this year,” he said.

For more information on Drum & Roll, visit fshdsociety.org.

Shirley McMarlin is editor of Tribune-Review. You can contact Shirley by email at [email protected] or via Twitter .

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