[…] Beth Johnston, Development Officer at the FSH Society When my husband, Jeff, was diagnosed with FSHD in 2001 (after years of wondering what was going on with his body), we […]
Upcoming Denver FSHers Meeting: March 25th, 2017
Clinical Trial Research Network receives major award from NIH
by June Kinoshita Dr. Jeffrey Statland The FSHD Clinical Trial Research Network (CTRN), which was launched last year with a $121,000 grant from the FSH Society, has received a UO1 […]
Managing breathing issues
[…] a leading authority on respiratory issues that can arise in individuals with neuromuscular conditions, including FSHD. In the webinar, Bach recommended that every FSHD patient have respiratory function tested regularly, […]
Newly funded grants
[…] expression of the DUX4 gene, considered to be the root cause of muscle damage in FSHD. Michael Dyle Investigating the Molecular Consequences of Reduced NMD in FSHD Skeletal Muscle Myoblasts. […]
The time is now…
[…] trials of drugs intended to increase muscle size, however, drug developers showed little interest in FSHD, even in the decades following the ODA. This changed dramatically with the publication in […]