By Russell Caratenuto, FSH Society Ambassador As a child I never second-guessed my ability to stick out my shoulder blades and make what my friends would call “wings”. This difference… Read More »
“I decided to fight back”
Carden Wyckoff on Living with Muscular Dystrophy
FSH Society Ambassador Carden Wyckoff recently created a series of posts on Avelist regarding misconceptions and living with FSHD. Below is her latest post on living with muscular dystrophy as… Read More »
Hot off the press: FSHD care guideline
Evidence-based, if incomplete, new guideline is a major step forward. All too often, FSHD patients encounter doctors whose knowledge of the disease seems to be gleaned from dusty textbooks. A… Read More »
First-Ever FSHD Evidence-based Care Guideline Published by the American Academy of Neurology
From PRWeb Contact Information: Rosie Hale 617-779-1893 FSHSociety@shiftcomm.com Guideline is a landmark step forward for the diagnosis; comes as a result of FSH Society’s advocacy efforts over the past 20… Read More »
Bone health for FSHD patients
Carla Grosmann, MD, of the Kennedy Krieger Institute and University of California San Diego gave this talk about bone health at the FSH Society’s Mid-Atlantic patient network meeting on June… Read More »