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UPDATED! Thank you to everyone who donated to Michelle’s Forget Me Knot fundraising campaign. We didn’t quite reach our $50,000 goal, so Michelle has extended the deadline to donate to September 15th!!… Read More »
Forget Me Knot Fundraiser, Extended until September 15th!!
Bone Health and FSHD
by JUNE KINOSHITA, FSH Society Muscle plays an important role in bone health, and diseases such as Duchenne muscular dystrophy have been linked to low bone mineral density (BMD), abnormal bone… Read More »
A Segway for mobility
by TOM THOMPSON, Charlotte, North Carolina The first time I ever saw a Segway I immediately recognized it as something that could possibly help my mobility. My FSHD had progressed to… Read More »
Clinical Trial Research Network receives major award from NIH
by June Kinoshita 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 award from the… Read More »
Ohio FSHD Family Day Conference
Strengthening our network in the Midwest The FSHD Family Day Conference, hosted by Nationwide Children’s Hospital and the FSH Society on June 11, 2017, drew about 70 patients, families, researchers,… Read More »