Welcome to the Greater Philadelphia Chapter!
Thank you for visiting the Greater Philadelphia Chapter of the FSHD Society which officially launched in September 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.
Volunteer Spotlight: Taylor Quigg
Hear from your local activist, Taylor Quigg, about her journey with FSHD, the power of connection, and her vision for the future.
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To contact us directly, please email: PhiladelphiaChapter@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 Greater Philadelphia chapter.
Upcoming Events
Women on Wellness – Estrogen & FSHD
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Loralei Thornburg, MD, professor of... Read More »
Wellness Hour – Chair dance party
Zoom Virtual Meeting , United StatesDancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and... Read More »
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, December 12th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD... Read More »
BILL MACLEAN
Chapter Director
Having been a member of the FSHD Society for well over a decade, I recognize the value of a community that shares experiences, techniques for dealing with FSHD and research that will ultimately lead to a treatment and cure. Dealing with this disease alone is very difficult. Having a community to share the burden makes a real difference. My wife provides an incredible level of support and confirms the value of the FSHD Society. This is the reason we decided to start the Philadelphia Chapter.
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.
