"By Age Twenty, 95% of  individuals with FSHD

will have symptoms related to muscle weakening."

Genomics Core Facility at SUNY Stony Brook	Jennifer Burgess Valentine and Dr. Eli Hatchwell
Dr. Eli Hatchwell

April 5, 2010 Massapequa Park, New York

LIFSHD Foundation Funds Research Project to Find FSHD Gene. Project Headed by Dr. Eli Hatchwell, Director of the Genomics Core Facility and Associate Professor at SUNY Stony Brook

Long Island FSHD Foundation announced the funding of a new scientific research project to find the elusive gene that is linked to FSHD (Facioscapulohumeral Muscular Dystrophy). The study, entitled, “Novel Approaches to Finding the FSHD Gene,” will be headed by Dr. Eli Hatchwell, Director of the Genomics Core Facility and Associate Professor at the State University of New York at Stony Brook. Dr. Hatchwell received his medical degree from Cambridge University and his PhD from Oxford University. He has done work with Autism and Congenital Heart disease and is a welcomed attribute to the FSHD field.

“We are thrilled that Dr. Hatchwell is eager to embark on FSHD genetic research and embrace the complexities and challenges of the FSHD genetic puzzle,” stated Jennifer Burgess Valentine, Founder/Executive Director of Long Island FSHD Foundation.

FSHD patients interested in donating samples for the study are asked to contact Ms. Valentine at FSHDfoundation@gmail.com

Long Island FSHD Foundation is a 501(c)(3)non-profit organization dedicated to the effort of eradicating the life-altering effects of Facioscapulohumeral muscular dystrophy (FSHD). The organization is an independent, volunteer foundation providing funding to research scientists in the hope that stimulating scientific research in the field of FSHD will lead to an effective treatment and eventually a cure. Although FSHD is now documented as the most common form of muscular dystrophy, FSHD research has been dramatically under funded by major muscular dystrophy organizations and the National Institutes of Health for decades. Long Island FSHD Foundation is the only organization in the New York area, and only one of three in the nation, specifically focused on FSHD.

FSHD usually strikes during the teenage years. By age twenty, 95% of individuals with FSHD will have symptoms related to muscle weakening. At the present time, FSHD patients are faced with the harsh reality that they are living with a progressive disease for which there is no treatment and no cure.

Please help us keep those dreams alive.