Lee F. Kolakowski

The FSHD Society is the world's largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD). The organization is based in Lexington, MA and was founded in 1991 by Daniel Paul Perez and Steve Jacobsen. The organization has been working for the past 32 years to accelerate the development of treatments and a cure for FSHD, which affects one million people worldwide. The FSHD Society offers a community of support, news, and information through its website. The FSHD Society has transformed the landscape for FSHD research and is committed to making sure that no one faces this disease alone.