by June Kinoshita, FSHD Society On June 29, 2020, the FSHD Society convened its landmark Voice of the Patient Forum. Patients and family members testified by livestream and email to… Read More »
We Heard Your Voice
Walking in water – mindful movement through difficult times
by Jennifer Egert, PhD, New York City I had a picture in my head: swimming in a pond at the base of a waterfall. Six months after the arrival of… Read More »
Why I did a 180 on participating in clinical trials
By Elizabeth W, Los Angeles, California There is a lot of fear when you live with a progressive disease like FSH muscular dystrophy. Your mind is constantly circling a sea… Read More »
Sole Searching
Finding shoes to fit your needs AND your personality by Beth Deloria, Allard (content sponsor) Did you know that shoes can be used to guess someone’s traits or characteristics? A… Read More »
Pandemics past and a diagnosis long delayed
by Bill Mirza, Palm Harbor, Florida I am an 86 year old white male, living with FSHD for the past 68 years. I wanted to share my life’s FSHD experiences… Read More »