Tips for air travel with a power wheelchair

Howard Chabner, a lawyer, disabilities advocate, and long-time FSH Society Board member, loves to travel internationally and has much experience with addressing the innumerable obstacles that impeded disabled travelers. He has compiled an extensive guide to air travel with a power wheelchair, which we are pleased to share with our readers. Download here: Tips for air … Read more of “Tips for air travel with a power wheelchair” »

Gimpy girl goes birding

A 2017 mid-Atlantic, physically accessible birding “Big Year” by DEB CALHOUN, Frederick County, Maryland Midsummer last year, I became determined to fight back against FSH muscular dystrophy. Most of my friends and family know I have FSHD. This isn’t a new diagnosis, and living fully with this disease has kept me determined and also sensitive to the … Read more of “Gimpy girl goes birding” »

Hot off the press: FSH Watch

The latest issue of FSH Watch is here! Highlights: Clinical Trial Research Network receives major NIH award World FSHD Day 2017 FSHD Family Day Conference in Columbus, Ohio Bone health and FSHD FSH Society’s congressional testimony Why I donated tissue Ask the physical therapist (part 3) How can I use a planned gift to support … Read more of “Hot off the press: FSH Watch” »

A Segway for mobility

by TOM THOMPSON, Charlotte, North Carolina The first time I ever saw a Segway I immediately recognized it as something that could possibly help my mobility. My FSHD had progressed to the point where I was having difficulty walking. At my first opportunity I went to a Segway dealership to try one. It was an amazing … Read more of “A Segway for mobility” »

Why I donated tissue

by MAUREEN EYE Centerport, New York In November of 2016, I underwent scapula fusion surgery in Baltimore, Maryland. During that surgery I had the privilege to donate muscle tissue for FSHD research. The donation itself was relatively simple. The paperwork prior to the surgery was minimal and mainly taken care of by the doctor’s office. The … Read more of “Why I donated tissue” »

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

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 … Read more of “New documentary tells one family’s story about FSH muscular dystrophy” »