[…] helpful. One of the many highlights of my trip was meeting June Kinoshita from the FSHD Society and Lexi Pappas a fellow FSHD warrior! I will definitely be coming back […]
Travel report: Boston Abilities Expo
Member of the team
[…] might be helpful to someone trying to decide whether to get involved. My involvement with FSHD clinical studies started in 2016. The first FSHD drug trial in close to a […]
YouTube series on interabled relationships
Meet Jenny and Tony, our new FSHD University “adjunct professors.” Jenny and Tony are a married couple who share information and offer encouragement on their YouTube channel in the context […]
The community’s role in accelerating therapies
[…] discusses the many ways in which your efforts, as individuals and family members living with FSHD, have paved the way for biopharmaceutical companies to pursue drug development. They truly cannot […]
Time equals lives. The parent’s voice
[…] testified at the Voice of the Patient Forum. Her son Noah was diagnosed with the FSHD four years ago, at the age of 10. Unable to keep up with his […]