Research Initiative Program for Tay-Sachs, Canavan, GM1, and Sandhoff diseases

About this program

The National Tay-Sachs & Allied Diseases (NTSAD) Research Initiative Program funds and supports research to advance treatments and cures for Tay‑Sachs, Canavan, GM1 gangliosidosis, and Sandhoff disease, offering grant awards plus non‑financial support such as recommendation letters, scientific introductions, and collaboration facilitation. Priority areas include clinical trial readiness (biomarker development, patient‑centered outcome measures), advancing therapeutic approaches (gene editing, cell therapy, improved delivery systems including LNPs and optimized vectors/BBB crossing), with internal support for carrier/prenatal/newborn screening and patient registry activities. Grants typically range from $2,000–$75,000 for one‑year awards and $20,000–$140,000 for two‑year awards (two‑year awards are reviewed after year one); proposals are evaluated for mission alignment, scientific merit, and feasibility. Eligible applicants are investigators and clinicians with projects aligned to NTSAD’s mission; RFPs are by invitation only — interested researchers should contact research@ntsad.org to arrange a meeting and proposal review by NTSAD staff, the Scientific Advisory Council, and external experts, with final approval by NTSAD leadership and the board Executive Committee.