Jill Abramson, Barbara Corcoran and Katie Couric to join National Tay-Sachs & Allied Diseases Association in New York City

Voices of Determination to Raise Funds for Rare Disease Research, Family Support, and Education

BOSTON, May 1, 2018 /PRNewswire/ -- National Tay-Sachs & Allied Diseases Association (NTSAD), the nation's longest-standing patient advocacy group, presents Voices of Determination, a fundraising and public awareness event with special guests Jill Abramson, Barbara Corcoran and Katie Couric, May 8, 2018 at The Harmonie Club in New York City.

The evening will feature a panel discussion that embraces the speakers' stories of personal and professional determination and honors NTSAD's 60 years of family support, community building, carrier screening and prevention, and the pursuit of treatments for all forms of Tay-Sachs, Sandhoff, GM1 and Canavan diseases.

"It's my pleasure and time well spent to join Jill and Katie on behalf of a good friend and an effective organization like National Tay-Sachs & Allied Diseases," said Corcoran, Founder of The Corcoran Group and "Shark" on ABC's Emmy Award-winning show, Shark Tank. "Led by powerful voices of those affected, NTSAD's dogged pursuit of treatments and potential cures and their determination to make a difference in the lives of many families facing these diseases is downright inspiring. I look forward to sharing my experiences with Jill and Katie and the guests to highlight the value of never giving up, regardless of the challenge."

Event Chair and former executive at The New York Times, Alexis Buryk, has a strong bond with NTSAD: in 2014, her twin daughters, Katie and Allie, were diagnosed with Late Onset Tay-Sachs (LOTS), a rare, progressive neurodegenerative disease currently with no treatment.

"Since receiving my diagnosis, my family has been urgently raising funds to find a treatment or cure for this disease, not only for my sister and me but for everyone who is affected," said Katie Buryk. "It's an honor to bring people together with NTSAD for Voices of Determination, which presents a rare opportunity to expand visibility, lend a voice to all those affected, and to support an organization vital to those it serves and to the larger rare disease community."

The event will begin with a reception at 6:30pm followed by the panel discussion at 8pm. 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.

 

CONTACT: Patrick Woods, National Tay-Sachs & Allied Diseases, 617-277-4463, patrick@ntsad.org

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SOURCE National Tay-Sachs & Allied Diseases Association

     

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