‘We just crossed $40,000’: Festivities in Carnegie celebrate nonprofit’s record year for fundraising

As with most aspects of life, battling a debilitating disease takes money, and quite a bit of it.

Thanks to the generosity of more than 230 donors, Mark Christman was able to share some especially good financial news on behalf of the cause he supports.

“This is a big shock to me this year, but we just crossed $40,000,” the Whitehall resident said. “Last year, we would raise $31,000, which I thought was great.”

He made the announcement during the second annual Drum & Roll to Cure FSHD, held Nov. 5 at the Andrew Carnegie Free Library in Carnegie. The acronym stands for facioscapulohumeral muscular dystrophy, and Christman is the founder and director of the Western Pennsylvania Chapter of the national FSHD Society.

“These funds are vitally important to find a treatment and eventually a cure,” he said. “But more than that, this event, for me, reminds me all the time of how rich my life is.”

Christman, a retired attorney, was a teenager when he learned of his affliction with the genetic disorder, which leads to weakening of skeletal muscles.

“About 20% of us end up in a wheelchair by the time we’re 50. Over 70% of people with FSHD experience debilitating pain and fatigue,” he informed the Drum & Roll guests. “But there is hope, and that’s why we’re here.”

The event featured Yamoussa Camara, director of the African Music and Dance Ensemble at the University of Pittsburgh, leading a troupe of percussive instrumentalists. The performance culminated with him inviting everyone in attendance to dance along to the invigorating rhythms.

Among those attending was FSHD Society regional director Anna Gilmore, who provided an update about the development of treatments.

“When we were all here together a year ago, we were really talking about one formula that was going in clinical trials, and it was in Phase 2,” she said. “One year later, we are now talking about one being in Phase 3 of three phases in a clinical trial. There are two more that are going into clinical trial within the next six months, and there are two more behind that in the pipeline.

“So there’s already so much motion and momentum, and it’s just a really exciting time to be involved.”

Of the money raised in 2022 on behalf of the Western Pennsylvania Chapter, $29,501 came from 162 employees of Trib Total Media, for which Christman serves on the board of directors.

Jennifer Bertetto, the company’s president and chief executive officer, credited him with making substantial efforts for the benefit of her organization.

“So when Mark needs help, any time Mark needs help, he’s going to get it from his friends at the Trib,” she said. “We have adopted the FSHD Society forever.”

Christman expressed gratitude for his association with the Massachusetts-based nonprofit.

“For someone with a rare disease, the ability to talk to people who have the same experiences as you, it’s just a special thing,” he said. “It’s a support system. It makes it so much easier for me to fight and be resilient.”

And judging by what Gilmore reported, the the FSHD community’s resilience is paying dividends.

“Our whole goal is to get disease-modifying treatments and eventually a cure to our families by the year 2025, and we really, really feel like that is achievable,” she said. “We see the finish line. We can taste victory. We know what the road map looks like. We know what the obstacles and potholes are, and we know that the strength of this community will overcome them.”

For more information, visit www.fshdsociety.org and www.fshdsociety.org/connect/local-chapters/western-pa-chapter.