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 of scary “what ifs.” What if I can no longer walk around the office? What if the next time I fall I hit my head?… Read More »
Why I did a 180 on participating in clinical trials
The community’s role in accelerating therapies
In our webinar on “Accelerating Therapy Development: The Patient Community Role,” Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics, discusses the many ways in which your efforts, as individuals and family members living with FSHD, have paved the way for biopharmaceutical companies to pursue drug development. They truly cannot do it without… 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 2012 study showed that 90 percent of a person’s personality is reflected in their choice of footwear. For those of us needing custom orthotics and… Read More »
A success for the virtual 2020 International Research Congress
by Jamshid Arjomand, PhD, Chief Science Officer, FSHD Society Our original plan for 2020 was to host the International Research Congress (IRC) in Washington, DC, in proximity to the FDA and the National Institutes of Health. The US capital (in an election year, no less!) would have provided an additional level of excitement to researchers… 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 with other individuals who may, I trust, find this brief history of my condition interesting. I was born and raised in Chicago; the youngest of… Read More »