[…] patients out of the darkness into the light. We premiered the film at our Cure FSHD gala on November 11. To all the patients, families and friends who have supported […]
“Into the Light” – The story of the FSH Society
Ask the Physical Therapist: Running a Marathon and Customized Workouts
[…] asymptomatic. I am still fairly active. Prior to my genetic diagnosis of being positive for FSHD in 2011, I ran two NYC marathons in 2008 and 2009. I am thinking […]
On patient registries: findings from our suvey
[…] Here are the findings, summarized in a slide presentation given by June Kinoshita, FSH Society executive director, at the European Neuromuscular Center’s international workshop on FSHD patient registries. Download here: FSHSociety-ENMC Workshop
Barbara Chin leaves an enduring legacy
[…] Barbara changed the lives of many patients and families through her peer counseling. The entire FSHD community owes her so much. Barbara’s bequest helps ensure that future generations will enjoy lives free […]
FSH Society’s first Open House!
[…] an organization to better serve you and reach our goal of finding a cure for FSHD. This will be a great opportunity to meet many of the staff members in […]