The FSHD Society announced today that Max Adler, an actor best known for his roles on the hit series “Glee,” available for streaming on Netflix, and “Switched at Birth”, is serving as this year’s national ambassador for the Society’s signature fundraiser, Walk & Roll to Cure FSHD, taking place September 12. There are currently no… Read More »
Glee star is Walk & Roll national ambassador
FSHD Society participating in #GivingTuesdayNow
This May 5, the FSHD Society is participating in #GivingTuesdayNow. This is a global day of giving and unity that arose as an emergency response to the unprecedented need caused by COVID-19. This is a day when we can all come together and give back, no matter who or where we are. Every act of… Read More »
FSHD Connect is a game changer
by Jennifer Egert, PhD, New York City After being involved with the FSHD Society for more than 10 years, participating in fundraisers, social media, and events, I finally made it to the FSHD Connect meeting in 2018 in Las Vegas. It’s sort of ridiculous that I hadn’t gone until then, especially when the Society is… Read More »
We Are Not Alone
BY DAVE LUKAS CRYSTAL LAKE, ILLINOIS The inaugural Chicagoland Walk & Roll to Cure FSHD exceeded every expectation and goal I had. What an amazing day filled with family, community, music, great food, fun, and picture-perfect weather! We had 230 walkers (my goal was 150). We raised $43,301 (my goal was $25,000). But more than… Read More »
Listen to our Giving Tuesday Interviews
You can now listen to our GivingTuesday Telethon interviews from our December 3rd event. Streamed over Facebook Live, our Telethon host Tim Hollenback interviewed dozens of leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of FSHD. Their stories were utterly compelling, and the sense of optimism for a treatment… Read More »