Share Your Story

When so few people have heard of FSHD, it’s especially important to “put a face” to the disease. Telling your story helps others understand how FSHD has affected your life and your family’s life. Celebrate your accomplishments and enjoyment of life while being honest about your daily struggles and anxieties. If you could have 24 hours without FSHD, what would you do? What do you miss most? What has FSHD taught you about life and yourself? What are your hopes and dreams?

There are many ways you can share your story here:

  • Write for our blog and newsletter. Send your ideas to
  • Make a photo documentary by combining photos and captions or short texts.
  • Post a video on YouTube and send the link to so we can add it to the FSH Society’s YouTube Playlist.


Growing Up with FSHD—A Short Documentary

FSH Society ambassador Lexi Pappas has just completed her first film documentary, based on her family’s multigenerational experience living with facioscapulohumeral muscular dystrophy. We learn how FSHD affects individual members of her family in different ways. The documentary is a powerful, personal “coming out story” about Lexi’s courageous decision to open up about her condition and why it is so important to become an advocate. The film is dedicated to her late grandfather, Edward Norris, a long-time benefactor of the FSH Society. We know he would be so proud. Thank you and kudos, Lexi!