Heringer Fund for Research

Raises funds in search of effective treatments and a cure for Tay-Sachs disease.


Fundraising Goal: $100,000

The Heringer Family Fund for Research has been raising awareness and funds in search of effective treatments and a cure for Tay-Sachs disease by supporting research to help eradicate rare, genetic diseases.

Tay-Sachs is a rare, genetic disorder caused by the absence of beta-hexosaminidase (HexA) causing various neurological symptoms, impacting speech and mobility. There are three forms of Tay-Sachs: Infantile, Juvenile, and Late Onset Tay-Sachs. The disease is most seen in infants and older children, who experience the most severe forms and usually do not live past childhood. Late Onset Tay-Sachs is a progressive form that affects individuals slowly over time, but it is not fatal.

Together, we have raised more than $60,000 for The Heringer Fund for Research, and your support has made a difference.

  • Patients with Late Onset Tay-Sachs disease participated in a clinical trial at the National Institutes of Health (NIH), at sites in Atlanta, Boston, Los Angeles, and New York, as well as several other countries around the world, for a drug developed by Sanofi Genzyme that hopes to arrest the progression of the disease. It was a multinational, double blind, placebo-controlled study.
  • The Jacob Sheep project supports the research, care, and treatment of a rare breed of sheep, which are born with a natural form of Tay-Sachs. The Jacob Sheep, serve as a large animal model that have been treated with gene therapy with viable success leading to clinical trials for children affected with Tay-Sachs and Sandhoff diseases and early-stage planning of a possible gene therapy clinical trial for Late Onset Tay-Sachs and Sandhoff (LOTSS) diseases in adult patients!
  • In December 2021, there were ten active clinical trials across all four diseases NTSAD addresses – (Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff). Research and therapies in these diseases benefit our entire community, and many other similar diseases, such as Alzheimer’s and Parkinson’s.
  • In January 2021 members of NTSAD’s LOTSS Community participated in a “Listening Session” with the Food and Drug Administration (FDA), where patients shared their experiences and recommendations for the FDA’s process to approve and evaluate clinical trials to help accelerate the process, with consideration for specific concerns of the rare disease population.
  • The Annual Late Onset Think Tank meets annually to foster collaboration among elite doctors, scientists, and experts in the field of genetics and rare diseases to share information and research developments as well as to generate new ideas and innovation.
  • Finally, NTSAD hired the organization’s first-ever Research Director, Valerie Greger, Ph.D. in 2021.

We are grateful to the ongoing generosity of our family and friends, which means so much more to us than words can express.

Thank you from the bottom of our hearts for your support!

Ways to Give

Credit Card

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Click below to make a gift via PayPal.

Mail or Phone Donations

(617) 277-4463

Checks payable to NTSAD.

Mailing Address:
2001 Beacon Street
Suite 204
Boston, MA 02135.

Hi Family and Friends,

I recently learned that I have Late Onset Tay-Sachs disease.

I was nervous to share my story because I didn’t want people to look at me differently. However, it’s more important for me to help raise awareness and be an advocate for children and adults with this rare disease. It’s crucial for me to speak on behalf of others who feel they haven’t been heard and have been impacted by something beyond their control.

I realize that this disease is a part of me, but it doesn’t define me.


Learn more about my personal story featured in Women’s Health Magazine here.

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