Our new issue of the FSHD Advocate, the first of 2021, is now available online. For those of you who receive our flagship magazine by the postal service, it will be arriving over coming weeks. As the cover and stories inside emphasize, the FSHD Society’s most important role in working toward a treatment is in activating all of our stakeholders. When all of us–people living with FSHD, chapter groups, friends, researchers, and companies working on treatments–work together toward the same goals, we will succeed!
In this issue, you’ll read about a promising FSHD drug brought back from the “valley of death” with hopes of going into a clinical trial next year. You’ll read about a new FSHD research center in Colorado that is creating opportunities for researchers and patients to work together toward finding treatments. You’ll read the stories of people who activated themselves to help others and to improve their own quality of life. We take inspiration from the words of David Fejgenbaum, MD, author of the best-selling book Chasing My Cure: A Doctor’s Race to Turn Hope into Action:
I could no longer hope someone else, somewhere would perform research that would lead to breakthroughs that could save my life. If I were to survive again – and to survive long term – I had to get off the sidelines and act. If I didn’t start fighting back to cure this disease, no one else would….