by Danielle Liptak, Leland, North Carolina Last fall, I traveled with my parents to Boston for the Abilities Expo. It was a great trip and I’d like to share my experiences. With so many of us sheltering in place, it’s good to reminisce and to look forward to the day when we can travel again…. Read More »
Travel report: Boston Abilities Expo
Press release from Fulcrum Therapeutics
Fulcrum Therapeutics Provides Business Update on Impact of COVID-19 CAMBRIDGE, Mass., April 2, 2020 – Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today provided a business update in the context of the developing situation with the COVID-19 (coronavirus) pandemic. “During the… Read More »
What would be meaningful benefits of future treatments?
The current COVID-19 crisis has forced us to postpone the Voice of the Patient Forum. We will be rescheduling it for the earliest feasible date. In the meantime, we hope you and your family stay healthy through this difficult time. We have set up our “Sequester Camp” page with activities and resources to help our… Read More »
FSHD Advocate on the Road to Clinical Trials
“Never give up, for that is just the place and time that the tide will turn.”–Harriet Beecher Stowe As we enter a new decade – one that we believe will see effective therapies become available – the families that form the FSHD Society face new challenges. This year, we have an unprecedented opportunity to participate… Read More »
Genetic testing for FSHD—a new frontier
There are exciting new developments in FSHD genetic testing. A new genetic test for FSHD is now being offered by PerkinElmer Genomics, a global company known for scientific and medical testing services. Other companies and groups are likely to follow suit. This is the first major innovation in FSHD genetic testing in nearly three decades… Read More »