At the end of the day, if there were a drug that stopped FSHD in its tracks, would you want it, even if it did not restore what you have… Read More »
The Future is Now for the Voice of the Patient
The Future is Now for Natural History Studies
Here’s what keeps us up at night: researchers will find a drug that actually works, and yet without understanding the natural history of the disease, they can’t prove the drug… Read More »
$447,620 in funding for four new projects
The FSHD Society Board of Directors approved $447,620 in funding for four projects submitted in the February 2019 cycle. These grants will move forward four distinct strategies that show promise…. Read More »
The Future is Now for Clinical Trials
Our community has been promised for decades that “one day in the future” there will be treatments for FSHD, and so it’s amazing to realize that day is almost upon… Read More »
A new, improved CRISPR-Cas9 technology
By Angela Lek, PhD Yale University The discovery of CRISPR-Cas9 gene-editing technology has undoubtedly revolutionized the field of human genetics, enabling for the first time in human… Read More »