Muscular dystrophy is a part of me, but it does not have me by DAVID YOUNGER, PhD Austin, Texas I was diagnosed with FSHD when I was about four, at the same time my mother and grandmother were diagnosed. The only symptoms I had at that point were that I slept with my eyes partially closed and a… Read More »
Moving toward well-being
ACE-083 Phase 2 trial results presented at AAN conference
Preliminary results from the ongoing phase 2 clinical trial of ACE-083 in FSHD patients were presented today at the American Academy of Neurology 70th Annual Meeting in Los Angeles, California.The oral presentation by Jeffery Statland, MD, of the University of Kansas Medical Center, included preliminary findings from cohorts 1 and 2 in the open-label, dose… Read More »
Walking & Rolling Toward a Cure!
We are excited to announce the launch of our first nationally branded event, the Walk & Roll to Cure FSHD. This signature fundraising event will take place in September and early October 2018 in several locations around the country, with additional sites being added in 2019. FSH Society Walk & Roll fundraising events… Read More »
Intelligent orthotics step forward at the MIT Media Lab
During the 2014 biennial FSHD patient conference in Boston, the FSH Society arranged for a group to visit the MIT Media Laboratory, where Professor Hugh Herr leads a visionary team developing prostheses powered by robotics and artificial intelligence. We knew not only that our members would be fascinated by the research but we also wanted… Read More »
Living with FSHD – My journey to a diagnosis
by Angela Davis, Marquette, Michigan I first started noticing something was a bit off when I was around age 15. People often asked if I hurt my leg or knee. They said it looked like I was walking with a limp. I always said, “No, I am fine,” and brushed it off. After a while,… Read More »