St. Louis Chapter

Welcome to the St. Louis Chapter page!

This chapter was founded by Marsha Sverdrup and officially launched on November 1st 2018 with a great meeting at the Daniel Boone Branch Library. We are putting together our plans for 2019 – stay tuned for updates! 

Join us for our Chapter Meeting on June 20th, World FSHD Day!

We are excited to be hosting our St. Louis Chapter Meeting on World FSHD Day! This will be a social gathering, as well as the kick-off of our Walk & Roll to Cure FSHD! We will also be doing a group “orange slice selfie” to post. We are excited to be making this a POT LUCK event! Bring a dish to share, if you can. Find some great Pot Luck ideas HERE!

RSVP Here for the meeting!

The Walk & Roll

It’s official – The 2019 Walk & Roll to Cure FSHD is up & running! We can’t wait to celebrate our inaugural fundraiser with you all. We have some big goals for this year, because we want a cure NOW! Please join us in this awesome event to raise awareness, build our community, and most importantly, fund the CURE for FSHD! Register to participate or support our event by making a donation!


To get in touch with us, please email Chapter Director Marsha Sverdrup at: