Western Pa. chapter of FSHD Society to host fundraiser to fight rare form of muscular dystrophy

After being diagnosed with a rare disease that ultimately left him using a wheelchair, Mark Christman called himself lucky.

He was lucky to have gotten a proper diagnosis for his disease, which often is misdiagnosed. He was lucky that, as an attorney, he could enjoy a successful career when some others with the disease struggle to continue their work. And he’s lucky now to see strides in research that could lead to a cure for the disease, or a drug that would slow or stop its progression.

Christman is one of about 870,000 people worldwide who have facioscapulohumeral muscular dystrophy, or FSHD, a genetic disorder that leads to weakening muscles and leaves about 20% of people who have it in a wheelchair by age 50. Over 70% of people with the disease experience debilitating pain and fatigue, according to the FSHD Society.

There is, so far, no treatment or cure.

But as the founder of the Western Pennsylvania chapter of the FSHD Society, Christman is doing his part to try and change that.

The FSHD society connects individuals with the disease and raises funds to support research of potential treatments and cures.

“We’re on a path where scientists and the FSHD Society are saying it’s an achievable goal to have a treatment for this disease by 2025,” said Christman, a retired attorney who serves as a trustee for Trib Total Media. “It’s a really exciting thing.”

The local chapter is hosting a Drum & Roll fundraising event to support that research. Individuals and teams can donate online to participate. Slated for Saturday, Nov. 6 at the Andrew Carnegie Free Library and Music Hall in Carnegie, the event features Yamoussa Camara, the director of the African Music & Dance Ensemble at the University of Pittsburgh, who will lead the celebration for fundraisers and advocates.

Through fundraisers like Drum & Roll — which, on Friday, had raised nearly half of its $30,000 goal — the FSHD Society is funding a variety of research, including studies to develop biomarkers, which would help drug developers measure the impacts of potential treatments and cures.

FSHD is a progressive, asymmetrical disease that impacts everyone who has it differently. For Christman, it began as feeling weaker than other teenagers as he was growing up. It typically affects the face, shoulders and upper arms. For some individuals, like Christman, it later impacts the lower extremities, sometimes leading to wheelchair use.

For some, including Christman, it leaves people feeling isolated. Though he was diagnosed with the disease in 1977, he never met another individual with the disease until 2014, when he attended an FSHD Connect conference in Boston.

“It was invigorating meeting other people who have had similar experiences to me,” Christman said, adding he enjoyed listening to medical professionals explaining medical breakthroughs as they learn more about what causes the disease and potential treatments.

That’s what spurred him to launch the Western Pennsylvania chapter a few years later.

“We’re resources to each other,” said Christman of Whitehall. “It’s also a vehicle to educate people. We’re educating people who have this disease. We’re also trying to educate the public.”

Through events like Drum & Roll, Christman said he hopes to raise funds for research — and raise awareness so that people better understand the disease, which impacts about 1 in 8,000 individuals.

During the event, donors will be able to participate in Camara’s interactive entertainment, which Christman described as “energetic and fun.” There will be a dance choreographed especially for those in wheelchairs. There will be a raffle for those who raised funds, with the winner getting an authentic drum from Ghana.

“We’re hoping for a real celebration, a really fun time,” Christman said.

For more information or to donate to the Drum & Roll event, visit the Drum & Roll website.