Welcome to the Western PA Chapter!
Thank you for visiting the Western Pennsylvania Chapter of the FSHD Society which officially launched in June 2018. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
2024 Drum & Roll to Cure FSHD
Sunday, November 3, 2024, 1:00pm
National Aviary - The Garden Room - Pittsburgh, PA
In this unique and amazing event, FSHD warriors will come together to raise funds toward development of treatments for FSH Muscular Dystrophy!
Yamoussa Camara is the Director of African Music & Dance Ensemble at the University of Pittsburgh. He has extensive experience both teaching and performing, and on November 3rd, he will lead our group of fundraisers and advocates in a celebration of the work we're doing to get closer to treatments and a cure! Dance routines can be adapted to power wheelchairs and other mobility devices. You won't want to miss this fun event - register today to get involved.
We made headlines in 2023!
Our Chapter, and our Drum & Roll event, were featured in a recent article on Trib Live! Hear from our members, find out what we're working on, and why it's important to us. Click below to read more!
2023 Drum & Roll to Cure FSHD!
In 2023, our event moved to the National Aviary in Pittsburgh, but featured the same amazing band, adaptive dance instruction, and of course a Pittsburgh cookie table. If you haven't experienced this incredible event yet, don't miss another!
A very special thanks to our friends at Trib Total Media, who are once again our platinum sponsors. We couldn't do it without you!
Volunteer Spotlight: Mark Christman
Hear from your local Chapter Director, Mark Christman, as he shares his FSHD journey, what his involvement has meant to him, and his advice to the newly diagnosed.
To contact us directly, please email:
WesternPAChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Please join us! Simply fill out the form in the sidebar to become a member of the Western PA chapter.
Upcoming Events
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MARK CHRISTMAN
Chapter Director
Mark and his wife Renee have powered through the challenges of FSHD for more than 30 years. From the day that Mark proposed to Renee and her parents objected because they feared Mark’s disease, through decades of juggling two careers and raising three now-adult children, their unwavering devotion to each other has carried them through the toughest days.
It’s that type of support that Mark, diagnosed as a teenager and using a power wheelchair for almost 20 years, hopes to provide to others through the Western PA Chapter of the FSHD Society. A retired Pittsburgh attorney, Mark vividly remembers the first time he met another person with FSHD during a 2014 FSHD Society meeting in Boston. He also recalls how news of groundbreaking research spearheaded by the FSHD Society lifted his spirits and buoyed his hope for the future.
Mark is excited to start the Western PA chapter to empower patients and families through education, while leveraging their energy and the public’s interest to raise funds needed to accelerate the search for a cure to the disease that affects 1 million people worldwide.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
