Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

New York Area Fund

New York Area – A Driving Force

Since 1957, families and dedicated volunteers in the New York Area have been a driving force in the growth and success of NTSAD in accomplishing its mission. Educational and fundraising activities in New York, New Jersey and the surrounding areas have been instrumental in supporting research, family services and carrier screening community programs for prevention.

The strong bond between the New York Area Chapter and the National organization, when it moved its operations to Boston in the 1980s, has been an asset to both.  Over the years, the New York Area Chapter has helped to support and create unique programs for education and prevention, as well as supporting new research initiatives. Whenever the national organization was in need of grants or additional money for special projects, the New York Chapter has always been willing to fund them.

Strong Program and Partnership Support

Many programs and partnerships have benefited from the financial and volunteer support of the NTSAD New York Area Chapter and its family funds: Evan Lee Ungerleider Fund, Harry Hoffman Fund, Marion Yanovsky Research & Education Fund, and Handwerker-Heringer Fund for Research.

Programs funded and supported by the NTSAD New York Area Chapter include:

  • NTSAD Annual Family Conference
  • NTSAD Research Initiative
  • Tay-Sachs Gene Therapy Consortium
  • Jacob Sheep Tay-Sachs Research Project
  • Free carrier testing days for thousands of people
  • Dor Yeshorim  Carrier Screening Program for the Orthodox Jewish community
  • Laboratory Quality Control for Tay-Sachs Testing
  • Irish Tay-Sachs Study
  • Founding member of the Jewish Genetic Disease Consortium
  • Founding member of the Genetic Disease Foundation

Administration Transitioned to NTSAD

In June 2015, the New York Area Chapter of NTSAD transitioned its administrative responsibilities to the NTSAD National organization. All educational and fundraising activities will continue. The volunteers and supporters in the New York Area will continue to work with the national organization to accomplish its mission through support for Research, Education, Prevention and Family Services.

Support the New York Area Fund Today

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Donations by Mail or Phone:
(617) 277-4463
Checks payable to NTSAD
2001 Beacon Street, Suite 204
Boston, MA 02135

To set up annual recurring donations, please contact us at (617) 277-4463.

Maanas Memorial Fund Supports 2015 Research Grant

NTSAD Research Initiative Grant Supported
July 2015

About the Maanas Memorial Fund

Ria Datla, 17, in memory of her younger brother who died due to Sandhoff disease, performed  the Kuchipudi "Rangapravesam" -- a classical Indian dance from Andhra Pradesh.   Her goal was to raise  $10,000 for Sandhoff research.

“The Datla family’s support is crucial to our effort to develop a less invasive gene therapy treatment through the bloodstream. In addition to the financial gift, we’re so grateful for their moral support and trust. We share Ria’s goal ‘to remove fear and replace it with confidence,’ and we’ll do our best to honor Maanas in this work.” 

…Douglas R. Martin, PhD.

NTSAD Research Initiative

Project:  Intravascular Gene Therapy for Feline GM2 Gangiosidois
Principal Investigator: 
Douglas R. Martin, PhD
Auburn University

Goals of the proposal:

  • Optimize intravascular (IV) gene therapy to treat both central nervous system (CNS) and peripheral (rest of body) manifestations of feline Sandhoff disease (SD).
  • Conduct short-term (6 week) studies to compare different delivery routes (i.e. carotid artery and cephalic vein) for optimal therapeutic effect in the CNS and minimized vector levels in the periphery.
  • After selecting optimal delivery route, the therapeutic effect of pre-treating cats with mannitol to temporarily open the blood brain barrier and possibly permit use of a lower dose of vector for long-term therapy will be evaluated.

Impact of research:

NTSAD has previously supported efforts of the Tay-Sachs Gene Therapy Consortium to develop an effective gene therapy protocol for TSD and SD. Previous studies with direct intracranial injection of Adeno-associated virus (AAV) vectors expressing hexosaminidase dramatically increased the life span and quality of life in SD cats. While these proof-of-concept studies continue to support human application of intracranial gene therapy for TSD and SD, it is desirable to develop a less invasive and presumably safer approach that will also better address peripheral disease.

Read more: Maanas Memorial Fund

Lemonade & Football for Hope

Yard Sale to Benefit Hope

Saturday, September 26th and
Sunday, September 27th

12 Quail Lane

Limington, Maine 04049

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Aurora has taught us about love.
Not the gentle, butterfly love of spring,
but the excruciating, tenacious love
of deep winter.
She has taught us how to hold tightly together
through this frigid madness. 
To weld our hands and hearts 
into something stronger than before.
An iron bond of desperate, tragic, love.
This is her gift.
To forge her family
in the heat of her heart,
handing us a mirror,
to show us our own strength.




A new challenge that is easy (and drier than the other well-known challenge) has been issued by the families of NTSAD!

The rules:

1. Lip sync to your favorite song for one minute;

2. Challenge three people to do the same and/or make a gift to NTSAD here.

3. Share on the #LipSync4ACure page and your Facebook page.

4. Feel good knowing you've spread hope and had a little fun at the same time!


Extra Challenge: 

We want to get Jimmy Fallon's attention and challenge him to #LipSync4ACure on NBC's "Tonight Show!"