As we look back on the incredible year we have had, we want to acknowledge those who have shared their inspirational stories, strength and commitment to continue to do the things that they love. Throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.
Your support is life-changing to people like Kelly, Amy, Jeremy and Lilia! They’ve shared their victories with us through our #ShareYourVictory campaign. We encourage you to share your own victories by including the hashtag #ShareYourVictory in a tweet or Facebook post.
Kelly Mahon, @kemahon: 4yrs ago was DXed, couldn’t talk about #FSHD w/o crying. Last week, I spoke on a patient advocacy panel! #ShareYourVictory !
Amy Venters, @Amstrix1: #shareyourvictory single soccer mom, rescuing cats, surviving hurricane Matthew, traveling FL to Ohio, FSHD can’t keep us from living life!
Amy Venters, @Amstrix1: #shareyourvictory Dx at 11—2 scapular surgery, a single mom 4.0 kid, got 300+ pics/Fshdselfies, I explain FSHD to Drs in FL never heard @FSHD
Deborah Woolard (Jeremy’s mother): Jeremy doesn’t let Down syndrome or FSHD get him down! #ShareYourVictory
Courtney & Lilia Lemon: My 11-year-old daughter, diagnosed at age 10. Sharing how much getting a Gtube has made a big difference in her weight gain, growth, and strength. She has been able to increase physical activity, and progression of muscle weakness has slowed down. #ShareYourVictory
Thank YOU for making a difference! With your continued support, we can continue our work to push toward treatments and transform the lives of thousands of individuals and families living with FSH muscular dystrophy – as they all reach for and achieve their own victories!
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