National Tay-Sachs & Allied Diseases Association (NTSAD), the nation’s longest-standing patient advocacy group, announced today that former Combined Jewish Philanthropies (CJP) President Barry Schrage will keynote the rare disease organization’s annual gala on Thursday, November 8 in Cambridge, MA. Imagine & Believe brings together members of the rare disease community, including parents, advocates, researchers and industry members to raise funds and public awareness for Tay-Sachs and associated neurodegenerative genetic diseases.
One of America’s foremost Jewish leaders, Barry Shrage served for 30 years as president of CJP of Greater Boston. A Professor in the Hornstein Jewish Professional Leadership Program at Brandeis University, he is renowned for his tireless support of Jewish education; promotion of engagement by religious and nonreligious Jews; commitment to working for social justice at home and abroad alongside others; his strong support of Israel; bridge-building, outreach and engagement with the non-Jewish community in creative partnerships; and for his boundless energy and creativity.
Following remarks by Mr. Shrage, NTSAD will host a conversation between parent Mandy Ronaldson, whose young daughters Mollie and Madelyn were diagnosed in 2016 with juvenile Sandhoff Disease, and University of Massachusetts Medical School Associate Professor, Miguel Sena-Esteves, Ph.D., whose research focuses on treatments and potential cures for thousands of children and adults diagnosed with these rare diseases.
The event will begin with a reception and silent auction at 6:00 pm followed by the program at 7:45 pm. For more information or to register, please visit NTSAD.org or click here.
About NTSAD
In addition to providing research grants and supporting families and individuals worldwide, NTSAD’s educational programs raise awareness about how to prevent Tay-Sachs, Canavan, GM-1, Sandhoff, and related neurodegenerative diseases, which are each caused by an enzyme deficiency and are fatal in children and progressively debilitating in adults. Founded more than 60 years ago, NTSAD is recognized as a leading non-profit patient advocacy group with a demonstrated commitment to service, science and support. NTSAD offers help and hope to thousands of affected individuals and families from many backgrounds and ethnicities.
While the genetic mutations that cause Tay-Sachs Disease are more prevalent in certain ethnicities, including the Ashkenazi Jewish population, anyone can be a carrier.
Media Contact:
Patrick Woods
National Tay-Sachs & Allied Diseases
617-277-4463
