Welcome to the St. Louis Chapter!
Thank you for visiting the St. Louis Chapter of the FSHD Society! 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.
_________
St. Louis Walk & Roll to Cure FSHD - Fall 2021!
_________
To get in touch with us, please email Chapter Director Marsha Sverdrup at:
StLouisChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
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.
Upcoming Events
May
10
Wellness Hour (Virtual Meeting) – Personal transportation
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
Find out more »
FSHD Society Radio with Lori Brant, personal coach
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. "Our guest this month is Lori Brant, a life coach who lives with FSH muscular dystrophy.…
Find out more »
Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »
MARSHA SVERDRUP
Chapter Director
My family and I were introduced to the “world of FSH” almost eight years ago when my oldest daughter, 10 years old at the time, was diagnosed with the infantile form. Since we had no family history of this disease we were, needless to say, shocked by this diagnosis. As a parent I wanted to do whatever I could for my daughter so we joined the FSHD Society where we found a community of people that provided us with both information and support. I appreciate the opportunity to be able to give back to this community as the Director of the St Louis Chapter.
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!
