Celebrate World FSHD Day on June 20

PrintOn June 20, we will celebrate the inaugural World FSHD Day to raise awareness for Facioscapulohumeral muscular dystrophy. Participants from across the globe, including individuals with FSHD, their families and supporters, and advocacy organizations, will come together in various activities to raise awareness for FSHD, one of the most prevalent forms of muscular dystrophy.

On World FSHD Day, the FSH Society and fellow members of FSHD Champions, the international alliance of FSHD advocacy organizations, will ask individuals with FSHD, their families, physicians, researchers and supporters to share the World FSHD Day logo on social media as well as in a variety of activities. Other countries taking part in World FSHD Day include Italy, France, the Netherlands, Germany, Austria, the United Kingdom, Canada, Australia, Japan and China. We encourage everyone to plan their own activities using the event toolkit!

In Massachusetts, advocates in the state legislature and senate are behind a move to have June 20 officially proclaimed FSHD Day.

“This is the first time that the FSHD community has come together like this – mobilizing people from across the world, with different backgrounds, languages and experiences,” said Daniel Perez, co-founder, president and CEO of the U.S.-based FSH Society. “By raising awareness, we can make sure FSHD patients and families know that they are not alone, and we can help mobilize public attention and resources to ensure a better future for everyone affected by this disease.”

To learn more about World FSHD Day or to find an event near you, visit the FSH Society’s World FSHD Day Facebook event page. To host your own event as part of World FSHD Day, check out the event toolkit to help plan and publicize the activity, or spread the word on social media by using the event hashtags #WorldFSHD and #CureFSHD.


5 responses to “Celebrate World FSHD Day on June 20”

  1. My name is Clifford F Blake of WEBSTER, Mass. I have fsh and limb girdle. The Docs all said it more than Likely began at conception. In my case it has been very slow in attacking me, I am 80 and effects started about when I turned 65. Then I was treated for sciatica which was a misdiagnosis. A Doc at BI in Boston found it 12? years ago. I take tramadol as needed for pain. I can use a walker but have muscle weakness. Not complaining, however my quality of life “SUCKS.” I come from a family of 14 and I am the only one that got it. Luck of the draw!!!!

Leave a Reply

Your email address will not be published. Required fields are marked *