The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a “disease she had never heard of,” Meredith faced the wrenching loss of her beloved dancing. Her younger… Read More »
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 »
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 »
As we come up on the last days of 2016, we are taking one final look back on the incredible year it has been, and one last moment to recognize those who have shared their inspirational stories, strength, and commitment to continue to do the things that they love. As we mentioned in Part 1… Read More »