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.
Since its inception in 2002, our Research Initiative grant program has awarded more than 60 grants and provided more than $4 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 leukodystrophyA group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. Myelin is commonly referred to as the brain's "white matter", myelin covers nerve cells and ensures the clear transmission of nerve impulses from one part of the body to another. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient. The word leukodystrophy comes from the Greek words leuko (meaning white), trophy (meaning growth), and dys (meaning ill). If you put these words together, the word leukodystrophy describes a set of diseases that affect the growth or maintenance of the white matter (myelin). More. It includes basic researchers and clinicians with expertise in neurology, genetics, biomedical research, laboratory medicine, geneOften referred to as the "unit of heredity." A gene is composed of a sequence of DNA required to produce a functional protein. More therapy, and genetic counselingAs defined by the National Society of Genetic Counselors, genetic counseling is the process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease. This process integrates:
• Interpretation of family and medical histories to assess the chance of disease occurrence, or recurrence.
• Education about inheritance, testing, management, prevention, resources, and research.
• Counseling to promote informed choices and adaptation to the risk or condition.
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.
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.
To access our library of scientific literature on Tay-Sachs, Canavan, GM1, and Sandhoff diseases, please visit our Research Library.
For more information on grant opportunities, research initiatives, and other information for researchers, please email our Research Director, Valerie Greger, PhD (firstname.lastname@example.org).