Pittsburgh Fundraiser Nets $400,000 for FSHD Research
The Western Pennsylvania FSHD Society chapter held its sixth annual event at the National Aviary to support clinical trials.
Updated on Oct. 25, 2026 in Philanthropy
The FSHD Society Western Pennsylvania chapter successfully raised more than $400,000 during its sixth annual Drum & Roll to Cure FSHD event. The funds are dedicated to accelerating research for facioscapulohumeral muscular dystrophy treatments.
Why it matters
This fundraising effort aims to provide critical support for ongoing research and ensure patient access to future FDA-approved treatments for the degenerative condition. With several treatments in development, the financial backing is essential for advancing clinical progress.
The Western Pennsylvania chapter secured over $400,000 in total funds, including $35,000 contributed by Trib Total Media employees this year. In total, those employees have donated more than $200,000 over the past six years.
The players
FSHD Society
This is a global research advocacy organization dedicated to finding treatments and a cure for facioscapulohumeral muscular dystrophy.
Trib Total Media
This organization is a regional news media company that has consistently supported FSHD research through employee fundraising efforts.
Roy Stang
He is a long-term participant in clinical trials for FSHD treatments and receives regular infusions at the University of Pennsylvania.
Mark Christman
He is a patient advocate who was diagnosed with FSHD in 1977 and later helped establish local support networks for those affected by the condition.
The details
The event brought together patients, families, and supporters at the National Aviary to advocate for advancements in medical care. Currently, four treatments are in clinical trials, with eight additional trials expected to launch within six to eight months.
Timeline
The fundraiser took place on October 18, 2026.
Walter Mark Shoemaker died from FSHD complications in May 2024.
Roy Stang was diagnosed with FSHD in 2020.
Mark Christman received his FSHD diagnosis in 1977.
Market Landscape
This fundraising success mirrors the broader trend of patient advocacy groups funding the gap between basic research and the FDA drug approval process. It positions the chapter as a vital financial catalyst in the competitive race to bring the first effective FSHD treatments to market.
Local residents and supporters provide the financial fuel necessary to sustain clinical trials for emerging medical treatments. These contributions directly impact the speed at which life-changing therapies reach the public market for patients.
The takeaway
Community-led fundraising remains a primary driver for medical breakthroughs in rare disease spaces. Individuals can support these efforts by participating in local advocacy events that bridge the gap for patients awaiting new treatment options.
Further reading
For more information on regional charitable initiatives, visit the Philanthropy section.
Source note: This article includes information reported by TribLIVE.
