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… Read More »
Intelligent orthotics step forward at the MIT Media Lab
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…. Read More »
Talk Radio: Mindfulness with Dr. Jennifer Egert
Join us on April 25th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Jennifer Egert, Ph.D., a clinical psychologist with FSHD who offers mindfulness based psychotherapy… Read More »
Pro Golfer Morgan Hoffman’s FSHD diagnosis leads him to a higher calling
Contributed by MORGAN HOFFMANN West Palm Beach, Florida In November 2016, I was diagnosed with muscular dystrophy, an incurable disease. The last few months have been the most trying of… Read More »
Accessibility Hack: Sandals for the shower
Shared by ANTHONY MANNUZZA, Woodhaven, New York Living with FSHD has caused great difficulty for me in keeping my balance. I’m sure you’ve heard this many times from others who have… Read More »