On June 20, we will celebrate the inaugural World FSHD Day to raise awareness for Facioscapulohumeral muscular dystrophy. Participants from across the globe, including individuals with FSHD, their families and… Read More »
Celebrate World FSHD Day on June 20
Thank you, Spencer and Carden!
This week, Spencer Wyckoff competed on NBC’s “American Ninja Warrior” to raise awareness and funds for the FSH Society. Before taking the course, Spencer and his sister, Carden, described their family’s… Read More »
American Ninja Warrior features our Ambassador
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 »
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 »