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FSHD Society

@fshdsociety

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Our mission: accelerate research for treatments & a cure for facioscapulohumeral muscular dystrophy (FSHD) while empowering our families.
#CureFSHD

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Have you ever been asked a seemingly weird question from your neurologist or a survey about your #FSHD? The answer is way more significant than you might think.

These questions, along with other data, calculate your FSHD Clinical Severity Score, one of the most widely used standardized measures the field has for determining the severity of FSHD.

#BetterLifeFSHD asks these questions to help provide preliminary data and provide researchers with a deeper understanding of how a supplement or drug might affect different populations.

Read our recent blog for more information on the FSHD Progression Survey completed by BetterLife participants, and consider signing up to fill out your own.

https://ow.ly/WM5I50ZPOQ6 by @fshdsociety

Merci à toutes les personnes qui se sont jointes à nous à Québec le week-end dernier pour un déjeuner convivial et une réunion de section locale. Quel plaisir de retrouver tant de visages familiers!

Nos sections locales vous permettent d’échanger avec d’autres personnes qui comprennent ce qu’est la FSHD. 🧡

Thank you to everyone who joined us in Qúebec City last weekend for a cozy lunch and chapter meeting. It was wonderful to see so many familiar faces!

Our local chapters allow you to connect with others who understand FSHD, support you in your journey, and provide you with valuable resources and information to keep you informed. 🧡

Never face FSHD alone, find your chapter: www.fshdsociety.org/local-chapter

#FSHD #FSHMuscularDystrophy #FSHAwareness #FSHDAwareness #FacesOfFSHD by @fshdsociety

And just like that, the 2026 Walk & Roll season comes to a close with two phenomenal events in Columbus, OH and Western PA. This past weekend we raised just over $100,000 with over 160 participants.

Across 28 events, you raised over $1,249,783 with ~2,000 participants registered and 170+ teams! A true testament to how, through community, we power the path forward, together. From the bottom of our hearts, thank you.🧡👨‍🦼‍➡️🚶‍♂️‍➡️

Head to our blog for a full recap and additional pictures from each event!

#FSHD #FSHMuscularDystrophy #FSHAwareness #FSHDWalkRoll by @fshdsociety

Congratulations to @fshd_europe on their new publication in Neuromuscular Disorders: “Facioscapulohumeral muscular dystrophy: revisiting three prevailing assumptions through the perspective of FSHD Europe.”

The authors challenge long-held assumptions about how FSHD progresses, how it is classified, and how it is treated. The paper reinforces three messages our global community shares:

1. FSHD is a disease spectrum. Onset can occur at any age, from childhood to late adulthood.

2. FSHD is progressive, but its course is highly variable from person to person.

3. Meaningful care exists today. Personalized, multidisciplinary care should remain central while disease-modifying therapies are developed.

“It’s great to see the global FSHD community sharing one clear message,” said Dr. Lucienne Ronco, Chief Science Officer at the FSHD Society. “People living with FSHD don’t have to wait for future therapies to get meaningful care. Multidisciplinary support for mobility, breathing, sleep, pain, and fatigue makes a real difference today, and it should stay at the heart of care as new treatments arrive. Thank you, FSHD Europe, for championing this!”

Read the full publication: https://www.nmd-journal.com/article/S0960-8966(26)01089-8/fulltext

#FSHD #FSHMuscularDystrophy #FSHAwareness #FSHDAwareness #FSHDResearch by @fshdsociety

Don't forget to register for next week's webinar on #AutonomousCars and how they can increase your independence and ability to travel.

Join Don Burke, Russell Lai & Jeff Johnston for this informative conversation with lots of time for Q&A. Link to register on our events calendar.

#FSHD #FSHDAwareness by @fshdsociety

Real life requires real answers, something Ryan Olson seeks to provide through his new website: RealFSHD.com. This week, Ryan Olson returns to the podcast to talk candidly about life with FSHD and why he created a site sharing what he’s found useful in the 25 years since his diagnosis. From an AI assistant called Dux to product recommendations to improve quality of life, the site offers hot takes and an easy to use interface.

Leading with humor and a desire to problem solve, Ryan brings real insight for real life with FSHD.

Catch the episode: https://youtu.be/pczGrDVMel0

Check out the site: www.RealFSHD.com
Note: Since the interview, Ryan switched from paid access to free access for all features.

No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.

On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.

If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.

Email: FSHDRadio@FSHDSociety.Org

You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode! by @fshdsociety

Approval of an effective FSHD therapy is a crucial first step. The goal is access for every person living with FSHD, at every age and every stage.

Right now, gaps in the science stand in the way. Without validated biomarkers and stronger data on children and non-ambulatory patients, trials take longer, labels stay narrow, and the people who need a treatment most are at risk of being left out.

Donate today to support approval and access for all.
www.fshdsociety.org/approval_access by @fshdsociety

Thank you to everyone who attended the Arizona Chapter luncheon this past weekend.

Our local chapters allow you to connect with others who understand #FSHD, support you in your journey, & provide you with valuable resources/info. Never face FSHD alone, find & join your local chapter today: https://www.fshdsociety.org/local-chapter/

#FSHMuscularDystrophy #FSHAwareness #FSHDAwareness by @fshdsociety

Applications are now open for the 2026 Pacific Northwest Young Scientist Scholarship Award. This award offers $1000 to cover travel costs to an #FSHD, #Neuromuscular, or #MentalHealth research conference. The winning scholar will be featured on our blog and in our Frontline newsletter, reaching our audience of researchers, clinicians, patients, and care-givers.

Application Criteria:
Under/grad students and early-career post-docs or post-grad researchers
Students in PT, OT, or genetic counseling
Anyone actively contributing to FSHD research (labs, clinics, etc.)
Residents of WA, OR, ID, AK, MT, or WY

Apply by: Monday, November 30, 2026
Winner announced: Friday, December 4, 2026
Conference must happen by: November 1, 2027

Apply here: https://forms.cloud.microsoft/Pages/ResponsePage.aspx?id=YLjKP9DtUE6PQZ9M6Hq8q1y12rweY0RHlE6jik-_U8RUNVdIVVQ4SUZXV1hRODQxMUpPUUhBU0NQVS4u

#FSHDResearch #NeuromuscularResearch #EarlyCareerResearchers by @fshdsociety

**Seeking Participants: the MOVE Pediatric Study for Multiple US-Based Sites**
The MOVE Peds study is seeking 80 participants for this 2-year study at 7 locations across the United States. The study seeks to increase understanding of Early-onset FSHD and refine clinical trial design for early-onset/severely affected individuals.

Site Locations: Palo Alto, CA; Iowa City, IS; Kansas City, KS; Rochester, NY ; Durham, NC; Salt Lake City, UT

Stipend Provided: $1500 for initial visit (2 days), $1000 each additional visit (1 day each)

This study is free and requires onsite visits. Click the below link to learn more and sign up.
https://clinicaltrials.gov/study/NCT06847282 by @fshdsociety

In exciting news, we have officially raised $1.2 million and are rolling ever closer to our goal of $1.3 million.

A huge thank you to the over 150 participants who joined us on the East coast this past weekend, and in North Texas. We've seen record-breaking event participation this year with over 2000 participants across 170 teams. The momentum is truly awe inspiring!

Atlanta (GA) - $45,700 raised with 88 registered participants!
Long Island (NY)- $21,500 raised with 42 registered participants!
North Texas - $13,100 raised with 28 registered participants!

One weekend to go! #FSHDWalkRoll #WalkRollToCureFSHD #CureFSHD #CureFSHDForAll by @fshdsociety

By popular request, we're sharing the recording of last week's FSHD University session on Forming Healthy Exercise Habits led by Dr. Davi Mázala.

Dr. Mázala explored:
-what makes exercise sustainable;
-shared practical strategies for building and maintaining healthy exercise habits; and
-discussed what we’re learning from real-world patient experiences.

Available on our YouTube.

#FSHD #FSHAwareness #FSHMuscularDystrophy #FSHDExercise by @fshdsociety