This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how… Read More »
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
An undeniable sense of optimism
In this interview, Dr. Jeffery Statland of the University of Kansas Medical Center explains how FSH Society funding seeded the creation of the seven-site Clinical Trial Research Network (CTRN), which in turn led to the largest clinical trial preparedness study that has ever been run in the United States. We have entered a convergence zone―a… Read More »
#GivingTuesday 2017 is Just Around the Corner!
Join us on Tuesday, November 28th, 2017 as we participate in the 6th annual #GivingTuesday! #GivingTuesday is a global day of giving fueled by social media and collaboration following the widely recognized shopping days of Black Friday and Cyber Monday. Known as the unofficial kickoff to the giving season, every year philanthropies are celebrated and communities… Read More »
With a Sense of Urgency
When Katie Ruekert reached out to the FSH Society, she discovered that by connecting with others with facioscapulohumeral muscular dystrophy (FSHD), she gained a new sense of purpose. Her husband Tom says, “She’s taken a lot of that fear and depression and turned it into something really good.” After months of thinking about what kind… Read More »
Help us promote World FSHD Day with a selfie video!
JUNE 20th is WORLD FSHD DAY! Help us raise public awareness of FSH muscular dystrophy by making a video selfie, urging everyone to take part in this year’s World FSHD Day awareness campaign. RaisingAware Orange is the international color of World FSHD Day – so we’re using an orange slice to spread the word. All you need to do is… Read More »