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.