Information for Researchers

Discover Grant Opportunities, Research Initiatives, and Resources.


The National Tay-Sachs & Allied Diseases Association (NTSAD) is dedicated to finding effective treatments and—ultimately—a cure for Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

To achieve this goal, NTSAD fosters collaboration within the scientific community, supports ground-breaking research, provides information for researchers, and connects researchers with industry partners.

Grant Opportunities

Since its inception in 2002, our Research Initiative grant program has awarded 72 grants and provided more than $4.7 million in funding. The data generated in some of these projects were leveraged to obtain future funding from larger National Institutes of Health (NIH) grants, resulting in over $10 million toward finding a cure.

NTSAD opens a Request for Proposals (RFP) every year for innovative research projects studying Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

For more information, please visit Grant Opportunities.

Scientific Advisory Council

NTSAD research is informed by our Scientific Advisory Council (SAC), which is made up of world-class experts in lysosomal storage disorders and in leukodystrophy. It includes basic researchers and clinicians with expertise in neurology, genetics, biomedical research, laboratory medicine, gene therapy, and genetic counseling.

The role of the SAC is to ensure that NTSAD’s research strategy and investments align with NTSAD’s mission to find effective treatments for Tay-Sachs, Canavan, GM1, and Sandhoff diseases and to serve as a resource for the NTSAD Community.

SAC members contribute their respective expertise to provide updates and context to new research developments and provide professional guidance to NTSAD. Members examine the progress, suggest new initiatives, and leverage their professional networks to recruit additional individuals to provide expertise to support initiatives. In addition, SAC members participate in NTSAD’s Research Initiative grant program by reviewing and evaluating applications.

Research Initiatives

Our research community is dedicated to finding treatments and a cure for Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff diseases. Please check back on this page as upcoming initiatives are announced.

Late Onset Tay-Sachs and Sandhoff (LOTSS) Think Tank

The LOTSS Think Tank brings together researchers, clinicians, industry representatives, and experts to accelerate finding effective treatments for LOTSS.

Alexis Buryk, mother of twin daughters who have late onset Tay-Sachs disease, inspired the creation of the Think Tank. She established the Katie & Allie Buryk Research Fund that – together with NTSAD – sponsors the Think Tank.

Newborn Screening Consortium

The Newborn Screening Consortium is an alliance of researchers, clinicians, and patient advocacy organization leaders, and industry stakeholders. The goal of the Consortium is to establish newborn screening for Canavan disease and GM2 gangliosidosis as quickly and efficiently as possible.

Other Resources

To access our library of scientific literature on Tay-Sachs, Canavan, GM1, and Sandhoff diseases, please visit our Research Library.

More Information

For more information on grant opportunities, research initiatives, and other information for researchers, please email our Research Director, Valerie Greger, PhD (

We Care for Rare

Facu y Giuli
Juvenile Tay-Sachs Disease

“Facu (12) y Giuli (16) ellos aman viajar y divertirse en familia”

Alejandra Saipert, Madre