Blazing a Trail to the Future

You inspire me! You have faithfully supported, worked, and engaged your network and loved ones to join our quest for treatments and a cure for FSHD. I want to acknowledge our deep appreciation for your past support and generosity. Many of the advancements of this year would not have been possible without you. It has … Read more of “Blazing a Trail to the Future” »

An undeniable sense of optimism

In this interview, Dr. Jeffery Statland of the University of Kansas Medical Center explains how FSH Society funding seeded the creation of the seven-site Clinical Trial Research Network (CTRN), which in turn led to the largest clinical trial preparedness study that has ever been run in the United States. We have entered a convergence zone―a … Read more of “An undeniable sense of optimism” »

#GivingTuesday 2017 is Just Around the Corner!

Join us on Tuesday, November 28th, 2017 as we participate in the 6th annual #GivingTuesday! #GivingTuesday is a global day of giving fueled by social media and collaboration following the widely recognized shopping days of Black Friday and Cyber Monday. Known as the unofficial kickoff to the giving season, every year philanthropies are celebrated and communities … Read more of “#GivingTuesday 2017 is Just Around the Corner!” »

With a Sense of Urgency

When Katie Ruekert reached out to the FSH Society, she discovered that by connecting with others with facioscapulohumeral muscular dystrophy (FSHD), she gained a new sense of purpose. Her husband Tom says, “She’s taken a lot of that fear and depression and turned it into something really good.” After months of thinking about what kind … Read more of “With a Sense of Urgency” »

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” »

Relive Team FSHD Cycling’s Race Across America!

Check out this amazing video of Team FSHD Cycling’s epic race this summer. Huge thank you to Emily Pollock for creating this priceless documentary. Warning: Have a box of tissues handy!