$2 million allocated for 15 projects by Jamshid Arjomand, PhD, FSHD Society Following a lull imposed by the global pandemic, the FSHD Society’s support for research grants has come back… Read More »
Record Year in Grant Funding
ReDUX4 trial result exceeds expectations
By June Kinoshita, Director of Research and Patient Engagement “Positive benefit/risk supports losmapimod’s potential to be a transformative therapy for the treatment of FSHD”—Fulcrum Therapeutics Fulcrum Therapeutics announced today that… Read More »
A children’s book about resilience
My name is Monica Boeh and I live with FSH muscular dystrophy. I have a master’s degree in education, and I have been working for a nonprofit organization whose vision… Read More »
Overcoming communication barriers with Project Relate
FSH muscular dystrophy often affects the muscles of the face, including the mouth. This can affect the ability to smile and can impair speech. Many people with FSHD experience the… Read More »
Extraordinary measures – Educating doctors
by Jamshid Arjomand, PhD, chief science officer It can take nearly a decade for the average person with FSH muscular dystrophy to get a correct diagnosis. Once they are finally… Read More »
Extraordinary Measures – Many shots on goal
by Jamshid Arjomand, Chief Science Officer With a dozen or more potential FSHD therapies in the drug development pipeline, why is the FSHD Society continuing to invest substantial funds− a… Read More »
FSHD Inspires Sam Ray to Build Mobility Devices
by Paul Winn, Brain & Life. Reposted with permission. Sam Ray, a 15-year-old, in Tucson, AZ, talks to our writer Paul Wynn about how his rare disease motivated him to… Read More »