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

Home / Living with FSHD / New documentary tells one family’s story about FSH muscular dystrophy

Posted on: Jun 22, 2017

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.

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Filed Under: Living with FSHD

Comments

  1. James says

    June 22, 2017 at 7:16 pm

    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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