World FSHD Day 2025

World FSHD Day, a global movement to raise awareness of FSHD, occurs on June 20. From orange slice selfies and proclamations to lit up buildings, World FSHD Day was a rousing success in 2025! Please read below to learn more about everything that happened this year!

2025 was a huge success with more awareness raised than ever on social media and at in-person events. We had so many photos, we put together an album of photos from our Chapters and events and see worldwide coverage by searching social media using #WorldFSHDDay.

• Painting Canada Orange from Coast to Coast: an exciting initiative raising awareness in Canada which will Light Up the following buildings/landmarks in orange (Read More Here):
  • Calgary Tower, Calgary
  • Sails of Light at Canada Place, Vancouver
  • CN Tower, Toronto
  • Ottawa Letters Sign, Ottawa
  • Niagara Falls, Ontario
  • Bridges across Montreal
  • Plus in-person celebrations in Alberta and British Columbia
• Chicagoland Celebrations: World FSHD proclaimed/recognized in the State of Illinois plus a number of buildings lit up in orange:
  • Marriott Marquis
  • John Hancock Tower
  • Prudential One & Two
  • Chicago Tribune Tower
  • Blue Cross/Blue Shield Tower
• Saint Louis Community BBQ and Celebration
• Atlanta, GA: Light It Up Orange, the King & Queen Towers
• Denver, CO: Light It Up Orange, the Empower buildings in the Denver Tech Center

Illinois had quite the year with local and state proclamations recognizing World FSHD Day. Joanne Dalessandro, who led the charge on these proclamations, appeared on the news and also hosted a Yappy Hour, to raise awareness. Joanne had this to say about this proclamations:

I’m honored that Illinois Governor Pritzker has signed a state proclamation designating June 20th as FSHD Day in Illinois. This official recognition raises public awareness and encourages people to learn more about our rare genetic disease. I also hope it will help build stronger community involvement and inspire greater participation in local events.

Orange Slice Selfies & Social Media Awareness

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, and #CureFSHD