“For all my friends and family out there who haven’t heard, I have recently been diagnosed with FSHD which is a form of muscular dystrophy. It is a progressive disease that basically attacks my muscles, and there is nothing I can do right now to stop or slow it down. I have joined the FSHD… Read More »
Chicagoland chapter members invite you to their Walk & Roll to Cure FSHD!
Our inaugural volunteer leadership summit
Last weekend, January 25-27, 2019, a force descended upon the Chicago O’Hare airport. And we’re not talking about the Polar Vortex. Twenty-nine chapter directors and Walk & Roll leaders convened for the FSHD Society’s inaugural volunteer leadership summit for two days of intensive learning, sharing, and networking – all to train them to become effective,… Read More »
Walk Pioneers Lead the Way!
This September and early October, the FSH Society will host its new signature fundraising event, the Walk & Roll to Cure FSHD in five communities from coast to coast. These Volunteer Leaders are paving the way for their communities to raise funds and increase awareness! 5 Brave Walk Pioneers have agreed to attend monthly training sessions, beta-test… Read More »
Walking & Rolling Toward a Cure!
We are excited to announce the launch of our first nationally branded event, the Walk & Roll to Cure FSHD. This signature fundraising event will take place in September and early October 2018 in several locations around the country, with additional sites being added in 2019. FSH Society Walk & Roll fundraising events… Read More »
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 »