Welcome to the St. Louis Chapter!
Thank you for visiting the St. Louis Chapter of the FSHD Society which officially launched in November 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.
Please join us for our 2nd Annual Walk & Roll on September 12, 2020
To get in touch with us, please email Chapter Director Marsha Sverdrup at:
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Want to make sure you never miss out on happenings with the local chapter and the FSHD Society? Become a member of our community today by signing up with the form to the right.
Past Events › St. Louis Chapter Events
Meredith Huml Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a "disease she had never heard of," Meredith faced the wrenching loss of her beloved dancing. Her younger brother Jonathan as diagnosed with FSHD as well, with symptoms that progressed even faster than hers. After years of struggling, she has not…Find out more »
Scott Harper,PhD Join radio host Tim Hollenback via Facebook Live on Wednesday, January 8, at 9:00 PM ET | 8:00 PM Central. His guest this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research Institute at Nationwide Children's Hospital, and associate professor of pediatrics at the Ohio State University College of Medicine, Columbus, Ohio. He is a molecular biologist…Find out more »
Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will…Find out more »