One week until Alec, Elizabeth, Marie, Lia, Emily, and Heather run the Falmouth Road Race. Support our runners as they fundraise to #CureFSHD. bit.ly/3WY3jf2 #FalmouthRoadRace #StrongerThanFSHD #RareDisease

3 days until the award-winning film @GOODBADTHINGSFILM hits AMC Theaters across the US on Thursday, August 15th. 🎞️🎞️🎞️ There's still time to get tickets: bit.ly/3YflBJF

Meet Mary Beth McCabe, the passionate Captain of Team McCabe and the NJ Shore Walk & Roll Leader. youtu.be/JHYRQfO4d_8 If you would like to be on the podcast, send us an email: [email protected]

"Love is the best part of life. All we can do is take the leap."🎥 Today's the day! Good Bad Things premieres across the US. Head to bit.ly/3YflBJF to snag last-minute tickets! #FSHD #DisabilityRepresentation

Thank you to Alec, Elizabeth, Marie, Lia, Emily, and Heather and congratulations on completing the Falmouth Road Race. Together they raised $11,787 to #CureFSHD. Great job everyone! 🏃🏃‍♀️🧡 #FSHD #StrongerThanFSHD #Neuromuscular #RareDisease #RareWarriors #FalmouthRoadRace

Did you know YOU can decide where, when, and how you want to fundraise for the FSHD Society? Our DIY Fundraiser Toolkit even provides the tools to bring your idea to life! Learn more about Jonah's recent "Fun Run" fundraiser and bar mitzvah project. bit.ly/3SVP8V6

Join us 8/29 for a live demonstration of BetterLife FSHD! Learn how your experiences and health data can drive us toward treatments faster than ever before. Are you ready to take control of your FSHD story? Register today: bit.ly/3X95a0E #BetterLifeFSHD #CureFSHD

It's National Dog Day! Join us in offering a huge thank you and a "good dog!" to the service dogs supporting folks living with FSHD.🐕‍🦺🧡 #NationalDogDay #StrongerThanFSHD #Neuromuscular #ServiceDog

In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. FSHers of Indiana, if you’re listening, reach out! youtu.be/7hp4oiY4t1E

Join us tomorrow for a live demonstration of BetterLife FSHD! Learn how your experiences and health data can drive us toward treatments faster than ever before. Are you ready to take control of your FSHD story? Register now: bit.ly/3X95a0E #BetterLifeFSHD #CureFSHD

We're thrilled to announce the launch of BetterLife FSHD! Be one of the first to join and receive tailored support while also helping to change the future for everyone with FSHD. Visit BetterLifeFSHD.org to discover how we're creating better lives, together.

Get inspired for Walk & Roll season with this story from Mary Beth McCabe! 🚶‍♂️👩‍🦼 We're looking for folks to share their stories for the International Walk & Roll Special hosted by Tim Hollenback. Send us a DM or email: [email protected] #FacesOfFSHD #CureFSHD

We’re so grateful to Dyne Therapeutics for partnering with us this year on the 2024 Muscle to Keep Life Moving fundraiser! Thank you to all who participated or donated. Your generosity helped provide a wheelchair-accessible van to an FSHD family, improving everyday life for the Marshalls.

Join the BetterLife FSHD study and be part of a movement that’s advancing research and improving lives. Track your symptoms, access personalized resources, and make a real difference. Sign up today at BetterLifeFSHD.org #BetterLifeFSHD #CureFSHD

Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. Tune in for her story of love, mindfulness, and community building. Subscribe on YouTube/a podcast app so you never miss an episode! youtu.be/_uev4DNp4-M

Thank you to everyone who joined our Walk & Rolls this past weekend! Enjoy these photos from Sacramento, Northeast Florida, and Alberta, Canada. ♥️💙🧡 Find an event near you or join the International Walk & Roll on Sat. Sept. 21: fshdsociety.org/walk-roll #FacesOfFSHD #CureFSHD

Don't miss our interview with Danny Kurtzman and Steve Way next week! And you can join Danny, Steve, and the FSHD community for a virtual screening of Good Bad Things from Sept 20-22! veeps.events/goodbadthings-…

The entire FSHD community is disheartened to hear Fulcrum has discontinued its phase 3 trial. Despite this decision, we have hope in the robust pipeline of treatments and other ongoing clinical trials in FSHD. Read the full statement from Mark Stone: bit.ly/3z6JtVL

Read what we currently know about the REACH trial on our blog. We are following developments closely and will continue to provide updates as we learn more. fshdsociety.org/blog/

Join the BetterLife FSHD study and be part of a movement that’s advancing research and improving lives. Track your symptoms, access personalized resources, and make a real difference. #BetterLifeFSHD #CureFSHD #FSHDResearch