Raise awareness

Spread the Word!

The FSHD Society is on a mission to raise the visibility and understanding of FSHD in order to further reduce the time to accurate diagnosis, increase empathy and understanding, and speed up research progress. Through patient involvement and activism, and with patients visible as stakeholders in the clinical management of FSHD, together we are bringing FSHD out into the light.

Here are some of the ways you can join us in raising awareness for FSHD:

  1. Update your social media profiles and post about why we need to build awareness and support.
    • Use the #CureFSHD hashtag on social media and join the campaign
    • Join the #FSHDSelfies social media campaign by posting your pictures of life with FSHD and using the hashtag
  2. Participate in World FSHD Day June 20th
    • World FSHD DayEvery June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. The Orange Slice Selfies campaign is our signature social media event to recognize World FSHD Day. Supporters post a photo of themselves to social media using an orange slice in place of their smile with the official hashtag #WorldFSHDDay. Start a conversation on social media by combining the event’s official color, bright orange, with an eye-catching image representing a symptom experienced by many patients: the loss of the ability to smile.
  3. Help others learn about FSHD
    • Helping others better understand FSHD is critical to fueling the progress that changes lives for people affected by FSHD and ultimately will light the way to a cure.
    • You can view and share the videos found on our YouTube channel
    • Like, comment and share share our posts on Facebook, Instagram and Twitter
  4. Join an event
  5. Take action
    • Connect online through one of the may private Facebook groups or on our official social media channels
    • Stay informed by signing up for email updates, following our blog, and subscribing to The Advocate
    • Donate
  6. Opportunities in your community
    • For local opportunities to connect with others to raise awareness about FSHD, find your local chapter and find an opportunity that matches your passion.