New documentary tells one family’s story about FSH muscular dystrophy

Diane and Lexi Pappas
Diane and Lexi Pappas

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!

Here is Lexi’s blog post about her documentary.


One response to “New documentary tells one family’s story about FSH muscular dystrophy”

  1. Beautiful girl. You are still so strong. You got up off the floor no problem.

    My knees started buckling occasionally at 17 while playing soccer. By 18 I could not run. We adapt right, wing it through life.. Hopefully we get some help sooner or later.

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