Tune in on Wednesday, June 8, for American Ninja Warrior on NBC! The episode airing at 8:00pm ET / 7:00pm CT focuses on the popular show’s Atlanta trials and features Spencer… Read More »
American Ninja Warrior features our Ambassador
FSHD Stories: No more hiding
By Lexi Pappas [youtube=https://www.youtube.com/watch?v=C8qyAHqydGs] Every year my school holds a public speaking colloquium where over 50 people participate. It is a competition for students to prepare a 3 minute speech… Read More »
The last one in
Volunteering for research, feeling the weight of responsibility By David Lukas, Village of Lakewood, Illinois I was diagnosed with FSHD in April 2015. In October 2015, I participated a clinical… Read More »
Raising awareness on highway billboards
The state of Massachusetts has a program through which operators of electronic billboards must donate some space to nonprofits. We were able to obtain space by partnering with the Massachusetts… Read More »
The Power of 25 – Our Spring Challenge Campaign
This spring, we are launching our most ambitious annual campaign ever to mark this, our 25th year since Daniel Perez and Steve Jacobsen founded the FSH Society. Our goal: to… Read More »