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!! We are so grateful to Michelle and Dave Mackay’s matching gift offer, and for this opportunity for more of us to rise to the challenge!… 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 turnover, and increased risk of fractures. It was not known whether FSH muscular dystrophy also affects bone health, and a new study published in Muscle… 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 the point where I was having difficulty walking. At my first opportunity I went to a Segway dealership to try one. It was an amazing… 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 National Institutes of Health. The project will receive $469,642 for the first year. Additional funds, up to a total of nearly $2.7 million, will be… 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, and clinicians to Columbus, Ohio. The half-day meeting provided an opportunity for two of the nation’s leading FSHD research centers to share expertise and research… Read More »