Living with #FSHD comes with hidden costs: personal care assistants; home improvements or even full moves; new wardrobes; and more. Mark your calendars for our Nov 2025 #FSHDUniversity webinar sharing 5 years of health economics research. Register here: us02web.zoom.us/webinar/regist…

This week, Tim spoke with Kendra, who discussed how her faith helps her deal with the constant grieving process caused by FSHD: the grief at losing her brother so young and the grief that comes with each changed ability and lost muscle. youtu.be/K003dGjhSMM

Earlier this month, Dr. Kathy Matthews joined our Parents' Roundtable for a discussion about genetic testing, pediatric FSHD care guidelines, & the FSHD continuum. Watch the recording: youtu.be/w0lt-vteiYA Join the Roundtable: go.fshdsociety.org/parents-roundt… #EarlyOnsetFSHD #FSHD

One year ago today, we launched BetterLife FSHD. BetterLife gives people living with FSHD a way to track their health, share their experiences, & help drive research forward. Thanks to you, BetterLife is already making an impact. We can't wait to see where the next year takes us!

Our North Carolina Chapter members had a blast at last weekend's baseball outing! No one needs face FSHD alone with our chapter program. Find your local community today: FSHDSociety.org/local-chapter #FSHD #FacesOfFSHD #VoicesOfFSHD #CureFSHD

🗓️ Here's a look at our September events! You can join Gathering Place groups and FSHD webinars via Zoom. Visit our Events Calendar for more details - especially Walk & Roll dates! - and to sign up! fshdsociety.org/events #FSHD #Neuromuscular

Connect with your local chapter! Check our Events Calendar for September chapter meeting details: ow.ly/xEtQ50Wyke9 There is great power in community. Find yours, and never face #FSHD alone.

Are you considering genetic testing? There’s a lot to think about. Don’t go it alone: participate in TestFSHD. TestFSHD is offered in partnership with Genome Medical, Inc.. Schedule your consultation today: FSHDSociety.org/TestFSHD. #FSHD #CureFSHD #TestFSHD #RareDisease #GeneticTesting

FSHD progresses rapidly, leaving many unable to access clinical trials and potentially treatments, when available. Our community is strong and willing to participate if and when inclusion criteria change. We must ensure that no one is left behind. #FSHD #CureFSHD

📢 The CDC released an update to their website w/ new pages covering the various types of #MuscularDystrophy including #FSHD! Take a peek at the pages which include helpful links and the Kevin's story. #CureFSHD #FSHDAwareness #FSHMuscularDystrophy #MDAwarenessMonth #MDAwareness

Earlier this month, Dr. Amber Salzman joined our Parents' Roundtable for a discussion about parenting in the rare disease world. Watch the recording: youtu.be/pS1nFoMh-_w Join the Roundtable: go.fshdsociety.org/parents-roundt… #EarlyOnsetFSHD #FSHD

Earlier this month, Dr. Ray Huml attended and presented a keynote address at the inaugural Rare Trials Summit. Read his summary on our blog: fshdsociety.org/2025/09/18/sum… #FSHD #RareDisease #RareTrialsSummit2025 #RareTrialsSummit #Neuromuscular #CureFSHD #FSHDResearch

Every day without a treatment is a day of loss for families fighting #FSHD. CureFSHD for All is drawing much-needed attention to the plight of our youngest & most vulnerable as well as the non-ambulatory. When treatments do arrive, we must ensure no one is left behind. #CureFSHD

Join Tim for an interview with Michael King, return guest & leader of the North Carolina Chapter and Walk & Roll. In this episode, King discusses the power of sharing your FSHD story to create community, as part of advocacy efforts, & to effect change. youtu.be/-77axLRNeLI

🗓️ Here's a look at our October events! You can join Gathering Place groups and FSHD webinars via Zoom. Visit our Events Calendar for more details - especially Walk & Roll dates! - and to sign up! fshdsociety.org/events #FSHD #Neuromuscular

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

It is with great sadness that we share the passing of Daniel Perez, co-founder of the FSHD Society. Dan was a true pioneer and activist. Dan’s impact cannot be overstated. Our thoughts are with his family, friends, and all who were touched by his extraordinary life.

Announcing BetterLife FSHD's latest feature: Care Connector. We've integrated & improved our care finding tool: 🔍Search for & save providers 🌍Filter by specialty & location ✅Recommend & review providers Our commitment: help you live your best life with FSHD. #BetterLifeFSHD

"While his family and our community morns the loss, I want to honor the life of Dan Perez, a man whose vision, determination, and heart changed the course of FSHD forever." -Mark Stone, CEO of the FSHD Society Read Mark's tribute to Dan on our blog: fshdsociety.org/2025/10/06/a-p…

We're proud to announce the launch of FOCUS, the FSHD Open Collaborative Unified System, created by the FSHD Society’s Global FSHD Innovation Hub in partnership with @Lumiio_inc. Learn more: focus.lumiio.com #FSHDResearch #FSHD #GlobalFSHDInnovationHub #FOCUS #Innovation