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

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

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

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

He made the announcement during FSHD’s second annual Drum & Roll to Cure conference, 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 extremely important to finding a treatment and ultimately a cure,” he said. “But more than that, this event, for me, is a constant reminder 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 the skeletal muscles.

“About 20% of us end up in a wheelchair by age 50. Over 70% of people with FSHD experience debilitating pain and fatigue,” he informed 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 percussion troupe. The performance culminated with him inviting everyone present to dance to the invigorating beats.

Among those present was FSHD Society regional director Anna Gilmore, who gave an update on the development of treatments.

“When we were all here together a year ago, we were actually talking about a formula that was going into clinical trials, and it was in phase 2,” she said. “A year later, we’re now talking about one that’s in Phase 3 of three phases in a clinical trial. There are two more that will enter clinical trials within the next six months and two more that are pending.

“So there’s already so much movement 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, $28,580 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, praised him for making significant efforts to benefit her organization.

“So when Mark needs help, whenever 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, being able to talk to people who have the same experiences as you, is just a special thing,” he said. “It’s a support system. It makes it a lot easier for me to fight and be resilient.”

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

“Our whole goal is to get disease-modifying treatments and ultimately a cure to our families by 2025, and we really, really feel like that’s achievable,” she said. “We see the finish line. We can enjoy the victory. We know what the road map looks like. We know what the obstacles and pitfalls 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.

Harry Funk is a news editor at the Tribune-Review. You can contact Harry at hfunk@triblive.com.

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