Now available. Read our 2025 Impact Report
Now available. Read our 2025 Impact Report
Observed on June 20, اليوم العالمي للإصابة بفيروس نقص المناعة المكتسب is a global movement to raise awareness of Facioscapulohumeral Muscular Dystrophy (FSHD), one of the most common forms of muscular dystrophy. On this day, people living with FSHD, along with their families and friends, flood social media with orange slice selfies, light up landmarks in orange, and share stories to bring visibility to FSHD.
June 20, 2026 marks the 10th anniversary of World FSHD, join us in celebrating our community’s passion and resilience!
Quotes from an interview with Dr, Lucienne Ronco were included in FSHD Finland’s awareness raising campaign. You can read the articles here >>
According to Ronco, we are living interesting times for FSHD patients overall, and there will be
clinical breakthroughs expectedly. She emphasizes that effective treatments for FSHD would benefit not just patients, but society as a
whole.
Skye Anderson, MDA Ambassador, posted a beautiful blog on MDA Quest sharing her experiences of living with FSHD.
Once I started feeling that freedom, I couldn’t get enough. I pushed myself to do things that once felt completely out of reach, like surfing, even if those experiences looked differently than I initially imagined. That became one of the biggest lessons FSHD taught me: different does not mean less.
Martyn posted a moving reflection on life with FSHD to his blog Inside Martyn’s Head.
My story sits within a wider story of disability, faith, justice, and belonging that I refuse to step out of. World FSHD Day isn’t about presenting a life worth pitying so support is offered. It’s helping people make a connection with the person, explore the world we live, and understand the reality behind the diagnosis.
Hopefully, this reflection helps understand the condition and me better.
Ray Huml, a dedicated parent advocate and healthcare executive, wrote a blog for Patient Survery about the importance of World FSHD Day and keeping patient voices at the center of research, care, and clinical trial design.
The future of FSHD is being built now. It will require science, investment, persistence, and trust; families willing to share their stories; and professionals willing to listen. As a father, advocate, and member of this community, I believe our responsibility is clear: keep patients at the center, keep collaboration strong, and keep pushing toward a future in which FSHD no longer defines what is possible.
For the second year in a row, businesses, landmarks, and more will be lit up in orange across Canada, stretching from coast to coast.
Additionally, the chapters in Alberta and British Columbia are hosting community gatherings. For more information about events, celebrations, and awareness campaigns outside the United States and Canada, check out the World FSHD Alliance’s live blog.
***Make sure your event and advocacy gets recorded. Please reach out to بيث جونستون or ساسالا to make sure we add your information to the blog.
Paint Canada Orange, reel created by Genna, FSHD Ontario
View photos collected by the FSHD Society و the FSHD World Alliance on their respective webpages. Albums will begin populating the week of June 20th as photos are submitted and gathered.
World FSHD Day is a great opportunity to raise awareness about FSHD. Sample posts and graphics can be found on our website. While you can share any kind of informational (or other) content, many folks post “orange slice selfies.”
Playing on the childhood snack of orange slice “smiles,” the Orange Slice Selfie Campaign raises awareness about the everyday effects of FSHD. On June 20th, you are encouraged to post selfies using orange slices in place of your smile.
When posting, please use the following hashtags, to make your posts easy to find:
#WorldFSHDDay, #FSHD, و #CureFSHD
Russell has FSHD. Selina fights alongside him. This World FSHD Day, they’re matching every gift you make—dollar for dollar—because they know what’s at stake and they believe we can make a difference. Join them.
You can also view our Instagram reel (and story highlights) which collect images, video, and experiences from more than 50 organizations and folks living with FSHD.
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