Marion Sellenet, an artist living with FSHD, shared her film "Marion, or The Metamorphosis" at the 2025 IRC and inaugural FSHD Connect-Europe. Rent it today!. Rental Link: #FSHD #FacesOfFSHD #VoicesOfFSHD #DisabilityPride #DisabilityPrideMonth

Show us your outfit of the day! What clothing, brands, or alterations help you express your style while still maintaining comfort and function? Send us a DM or let us know in the comments!. #FSHD #FacesOfFSHD #AdaptiveClothing #Orthotics #OOTD

Dr. Ray Huml joined Tim for a conversation that dives deep. Huml, a dedicated caregiver, parent, and rare disease specialist, discussed his work on writing about rare disease care, disability rights advocacy, and small ways we can create massive change.

"We won't quietly surrender to this condition!" Michael Ahlers rides again to raise awareness about #FSHD. This weekend, he will complete the 120mi Triple Bypass: #TripleBypass2025 #CureFSHD #RareDisease #RareWarriors #FacesOfFSHD

We’re excited to announce the 2026 FSHD Connect Conference: June 26–27, 2026 at the Hyatt Regency O’Hare Chicago. This is your opportunity to gain knowledge, share experiences, and feel the strength of our community. More details to come—stay tuned!

Connect with your local chapter! Check our Events Calendar for July chapter meeting details: There is great power in community. Find yours, and never face #FSHD alone.

🗓️ Here's a look at our July events! You can join Gathering Place groups and FSHD webinars via Zoom. Visit our Events Calendar for more details and to sign up! #FSHD #Neuromuscular

Join us TODAY for a special FSHD University webinar with Dr. Nick Johnson presenting updates from Avidity Biosciences. Please register to receive the Zoom link: #FSHDResearch #FSHD #Neuromuscular

In honor of World FSHD Day, we're sharing stories submitted by YOU! Check back every day this week for community profiles, unique perspectives, and our annual campaign to power the path forward as we raise awareness about #FSHD. 🧡🍊. #WorldFSHDDay #WorldFSHDDay2025 #FacesOfFSHD

Thank you to everyone who joined us for the 2025 International Research Congress & the Industry Collaborative. The festivities are not over! This weekend also includes the inaugural FSHD EU Connect Conference & the Project Mercury Global Task Force meeting. #FSHD #FSHDResearch

A special update - and exciting words - from Mark Stone, CEO of the FSHD Society, and Nate Weedin, Vice President Medical Affairs & Advocacy at Avidity, from last night's IRC dinner!. #2025InternationalResearchCongress #FSHD #FSHDResearch.

The 32nd International Research Congress got off to a great start in Amsterdam today with 200+ attendees. Stay tuned for presentation spotlights, photos, & evening updates following both days of the IRC. #FSHDResearch #RareDiseaseResearch #NeuromuscularResearch #FSHD

We’re off to a great start in Amsterdam! Today’s FSHD Industry Collaborative brought together leaders from research, clinical care, and industry as momentum continues to build in the development of FSHD treatments. More to come!. #FSHDResearch #FSHD

New Video: watch our recording of Dr. Statland's recent breakdown of Fulcrum’s Phase 3 Reach study, the first phase 3 study ever conducted for #FSHD. The trial did not meet its primary endpoint, but it produced invaluable data to guide future trials.

Join Tim for a conversation with siblings Michele & Michael Ahlers about family, fundraising, and FSHD. New episodes every 2weeks. Catch the episode: Want to be on the show? Email: FSHDRadio@FSHDSociety.Org

This morning, Avidity Biosciences announced major milestones in the del-brax program. Read the full announcement from Avidity:.

Hosting a Do It Yourself (DIY) fundraiser allows YOU to decide when, where, and how you support the FSHD Society. Plan something fun that matters to you, and we will provide the tips, tools, and resources to make it happen. Start your fundraiser today:

Yesterday, FSHD advocate Joanne Dalessandro was featured on Spotlight Chicago! In her interview with FSHD Society CEO Mark Stone, Joanne shared the incredible work she is doing to raise awareness of FSHD in her community. Watch the interview here:

Save the Date for our International #WalkRoll to #CureFSHD. Join us Sat., Sept. 20, for North America's largest fundraiser dedicated to raising funds for #FSHD. Head to our website for local event info and to start your fundraising team!.

Since our founding in 1991, we've seen incredible scientific advances & increased support for #FSHDResearch. As we look towards #WorldFSHDDay, let's also remember where we come from & who helped us get where we are today. Read the full story on our blog:.