Programs & Initiatives

Fascioscapulohumeral MD

Facioscapulohumeral Muscular Dystrophy (FSHD)


Like other forms of muscular dystrophy (MD), fascioscapulohumeral muscular dystrophy (FSHD) is a genetic neuromuscular disorder that causes progressive muscle damage, weakness and tissue death. The most common type of MD, it is usually most noticeable in the muscles of the face, back and upper arm.

In 2015, NDRI was awarded a grant in partnership with the Fascioscapulohumeral Muscular Dystrophy (FSH) Society to develop a program through which individuals on the FSH Society Patient Registry would sign up to donate various muscle samples for the FSH Society’s biorepository. The Lexington, Mass.-based society’s mission is to provide investigators with a large array of tissue types, both diseased and normal, to further FSHD-specific research.

NDRI will aid in project development, management and collection of biospecimens from the prospective registered patients. Project development will focus on consenting and collecting muscle samples, after surgery or post mortem, from the face, arms, back and legs for the FSH biorepository through our Private Donor Program.

NDRI is a Not-For-Profit (501c3) Corporation.