Western Pennsylvania's Mark Christman champions FSHD awareness

Mark J. Christman doesn’t have the strength to hold his nearly 8-month-old grandson, William “Willie” Chavara.

“I am weaker every year,” said Christman, who was diagnosed in 1977 with facioscapulohumeral muscular dystrophy (FSHD), a genetic disorder that weakens skeletal muscles. “I can’t get in and out of bed myself or dress myself. There are photos of me with Willie, but someone else is holding him.”

Christman’s arms aren’t strong enough to embrace the baby, but this grandfather’s determination to help other grandparents hug their grandbabies is powerful. That’s one reason he created a local chapter of the FSHD Society in Western Pennsylvania.

The FSHD Society is the world’s largest advocacy and research organization for facioscapulohumeral muscular dystrophy, the fourth most common type of muscular dystrophy.

Christman hosts his annual fundraiser — the Western Pennsylvania Drum & Roll to Cure FSHD. The event started five years ago to raise funds for resources, research and one day, a cure. This year’s event is Oct. 26 at the National Aviary on Pittsburgh’s North Side.

Christman has raised a little over $250,000 in four years. This year’s goal is $80,000.

The money funds ongoing research and clinical trials. The U.S. Food and Drug Administration has fast-tracked a drug from Avidity Biosciences for designation under its accelerated approval program.

Funding delays

The FDA’s accelerated approval program means a faster path through the new drug application and clinical trial process.

Anna Gilmore, chief programs officer for the FSHD Society, said via email that they’ve been hearing from some of their top researchers that their National Institutes of Health grants are taking weeks, maybe months, longer to come in than they used to.

“It’s hard to pin down exactly why that delay is happening — in addition to the changes in the budget reconciliation, there have been some other recent policies that may be impacting the review process,” Gilmore said. “Delays in funding inevitably result in delays to the research, and this community has no time to spare.”

According to FSHD’s website, Avidity shared promising results from its Phase 2 clinical trial, where participants who received the treatment showed noticeable improvements in strength and function compared to those on placebo. The Phase 3 trial is actively enrolling.

Dr. Nicholas Johnson, professor and vice chair of research and neurology at Virginia Commonwealth University, added that, possibly by the end of 2026 or the beginning of 2027, a drug could be available for patients such as Christman.

Christman is not eligible for trials because he is in a wheelchair. About 20% of people with the disorder will need a wheelchair, according to the FSHD Society.

Drum & Roll

Christman, who will turn 65 this month, is hopeful. He needs a drug that not only stops the disease but can also build strength.

He draws strength from friends such as Robin Stemple, 67, of Shaler, who was diagnosed at 14. Blind since a car accident, Stemple will be performing at Drum & Roll, playing pop and jazz music. Stemple said he is not able to sing well because his voice has been affected by FSHD, and he has trouble with his right arm, making simple tasks like brushing his teeth challenging.

Stemple and Christman are two of an estimated 870,000 people worldwide who have FSHD. FSHD is inherited. Currently, there is no effective treatment or cure.

“If it can be caught early, it can be treatable and give hope to my family members who may carry the gene,” said Stemple, who has two 5-year-old granddaughters and a 3-year-old grandson. “The 3-year-old has learned to just jump up on my lap when he wants to read a book with me. He just climbs up on pap pap’s lap.”

Christman, a former real estate and business attorney and Trib Total Media trustee, was recognized with the Whitehall Man of the Year award in 2024 for his commitment to FSHD advocacy. He has also traveled to Washington, D.C., to speak with congressional lawmakers and raise awareness for patients with FSHD

“We at TribLive are proud to have helped Mark raise $250,000 over the past four years through Drum & Roll to cure FSHD,” said Jennifer Bertetto, TribLive president and CEO. “Helping to raise money for research and, one day a cure, has become a passion not just for me but for our employees who continue to contribute and participate in the annual fundraiser because they, too, believe in the mission. We as a company are committed to supporting one of our own in Mark Christman, who every day continues to advocate, not only for himself, but for others, too.”

“We have to end this disease,” Christman said.

The FSHD Society continues to fund millions in research. This year, the organization has raised $1.1 million through events such as Walk & Roll, which many chapters do across the country, and Drum & Roll. Drum & Roll is unique in that it was Mark Christman’s idea to do something different from a walk.

“We need funding to continue to get us there,” said Jess Wright, director of national fundraising events for FSHD Society. “Time is of the essence. People with FSHD aren’t asking for the impossible. They are asking for the everyday things that we take for granted, such as being able to reach a button to push on an elevator or hold their grandchild.”