National Tay-Sachs and Allied Diseases Association

National Tay-Sachs & Allied Diseases to Honor Dr. Stephen Groft, Champion of Rare Diseases Research at Benefit


Boston, MA -- (ReleaseWire) -- 10/29/2014 --The National Tay-Sachs & Allied Diseases Association (NTSAD), the nation’s oldest patient advocacy organization, will honor Stephen Groft, PharmD, at Imagine & Believe, the organization’s annual Boston fundraising event to be held Thursday, November 13, 2014 at the Royal Sonesta Hotel, Cambridge MA. Proceeds from the benefit will fund rare disease research and help provide support for families affected by Tay-Sachs, Canavan disease and other related rare genetic diseases.

Dr. Groft recently retired after an illustrious 30-year career at the NIH where he was Director of the Office of Rare Diseases Research (ORDR). A tireless advocate for advancing translational research, he was instrumental in moving rare diseases from relative obscurity to their current central role in biomedical research.National Tay-Sachs and Allied Diseases Association

“Dr. Groft’s exemplary dedication to improving the lives of patients with rare diseases is an inspiration to our community of families, clinicians, scientists, biotech companies, and other friends and supporters,” says NTSAD Executive Director, Susan Kahn.

In addition to providing research grants and supporting more than 500 affected families and individuals worldwide, NTSAD’s educational programs raise awareness about how to prevent Tay-Sachs, Canavan, Sandhoff, GM-1 and related neurodegenerative diseases, which are each caused by an enzyme deficiency and are fatal in children and progressively debilitating in adults.

“We are honored to recognize Dr. Groft’s many accomplishments and commitment to elevating rare diseases such that he changed the face of medical research,” says NTSAD President, Shari Ungerleider. “Like Dr. Groft, NTSAD is committed to giving help and hope to thousands of individuals and families from many backgrounds and ethnicities who have been or are affected by lysosomal storage diseases.”

Event lead sponsors are Genzyme, a Sanofi company, as well as Shire and Good Start Genetics. For ticket and sponsorship information please visit

Note to editors: Photos available upon request. Local families affected by Tay-Sachs or related lysosomal storage diseases are available for interviews.

Media Contact:
Edna Kaplan
KOGS Communication