VOLUNTEERS NEEDED FOR FSHD RESEARCH

The Chris Carrino Foundation for FSHD, together with researchers at State University of New York at Stony Brook and the New York Institute of Technology’s College of Osteopathic Medicine, is seeking volunteers for a collaborative research study into genetic factors determining FSHD severity.  FSHD severity varies significantly, even within families sharing the same common genetic mechanism, implicating other potential genetic “modifier” factors, which this study aims to uncover.  Uncovering these factors could improve understanding of the disease and, ultimately, help in the search for novel treatments.

This study is open to recruitment for individuals with FSHD who are over 18 years of age.  There is no cost for participation and an on-site visit is not required. Interested individuals will be mailed a saliva sample collection kit together with a health questionnaire and permission to review relevant medical records upon enrollment.

For further information or enrollment please contact  the principal investigator, Dr. David Tegay, at (516) 686-3897, or by e-mail at dtegay@nyit.edu.