June 20 is World FSHD Day 2022

A global celebration to raise awareness of FSH muscular dystrophy

Are you tired of getting blank stares when you explain that you or a loved one have facioscapulohumeral muscular dystrophy? How many times have you heard people say they also know someone with MS…?  If each of us could educate just one more person about FSHD, that’s one step forward for our community. If many of us raise our voices at the same time, our message will carry farther and have greater impact. That’s the idea behind World FSHD Day, a campaign on social media and beyond, observed every year on June 20.

Everyone can do something to raise awareness!

Visit our World FSHD Day toolkit page for a wealth of ideas. Whether it’s changing your social media avatar on that day, posting a logo or orange slice selfie, sharing your story, or hanging up orange lights and hosting a party, there’s sure to be something that you can do. This year, you can also purchase a World FSHD Day T-shirt to wear proudly.

When you share posts and pictures, be sure to use the official hashtag #WorldFSHDDay as well as #CureFSHD, and be sure to tag us @FSHDSociety so we can share your post.