Not Your Mother’s Yarn

FSH member Kathy Senecal will be fundraising for the FSH Society in the coming months at four different craft fairs through her business, Not Your Mother’s Yarn.  100% of the net proceeds will be donated to the FSH Society. Kathy offers a large selection of hand-spun yarns, as well as hats, snoods, fingerless gloves, and … Read more of “Not Your Mother’s Yarn” »

Our San Francisco Concert and Patient Meeting is right around the corner!

Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson. Don’t miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on Saturday, July 15, at San Francisco’s Jewish Cultural Center. This is the Bay Area’s premier FSHD networking and advocacy event! Our conference provides an exceptional … Read more of “Our San Francisco Concert and Patient Meeting is right around the corner!” »

World FSHD T-shirts are here!

World FSHD Day is right around the corner and we know you want to be ready to raise awareness.  The Society’s World FSHD Day t-shirts are here in the official color: orange.  Get into the spirit of World FSHD Day however you can!  Get creative!  Paint your nails orange, put up orange lights near your … Read more of “World FSHD T-shirts are here!” »

Intriguing research on tyrosine kinase inhibition as a potential therapy for FSHD: Sunitinib rescues muscle cells’ ability to develop

Written by Jim Albert Eldersburg, Maryland   A cancer drug has been shown to potentially rescue some of the damaging effects of DUX4, the gene implicated in FSH muscular dystrophy. The laboratory of Peter Zammit, PhD, Randall Division of Cell and Molecular Biophysics, King’s College London, United Kingdom, in collaboration with Robert Knight, PhD, of … Read more of “Intriguing research on tyrosine kinase inhibition as a potential therapy for FSHD: Sunitinib rescues muscle cells’ ability to develop” »

Update on Clinical Trial A083-02: a Phase 2 Clinical Study of ACE-083 in FSHD

The FSH Society has a long history of partnering with biotech and pharmaceutical companies to facilitate recruitment of patients and families for focus groups, provide patient input to clinical outcome measures, and participation in clinical trials. The Society also assists companies by providing connections, insights and scientific information in the research, therapeutic and clinical areas. … Read more of “Update on Clinical Trial A083-02: a Phase 2 Clinical Study of ACE-083 in FSHD” »