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NTSAD Research Initiative Program

NATIONAL TAY-SACHS & ALLIED DISEASES ASS

Foundation Rolling (Quarterly) Grants for Science Research
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Funding Amount

$2,000 - $75,000 (one year); $20,000 - $140,000 (two years)

Deadline

Rolling / Open

Grant Type

foundation

Overview

NTSAD Research Initiative Program

Program Focus: Funding research to advance effective treatments and ultimately a cure for Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff diseases.

Overview: Established in 2002, the NTSAD Research Initiative Program is dedicated to advancing scientific progress in rare neurodegenerative diseases. Since inception, the program has awarded 76 grants totaling over $5 million in funding. The program supports researchers not only through grant funding but also through letters of recommendation, scientific connections, and cross-field collaboration facilitation.

Program Impact:

  • High-impact investments have generated critical data and sustained essential resources

  • Many NTSAD-funded studies have produced results that strengthened investigators' ability to secure larger grants from major funders such as the National Institutes of Health

  • Some projects have attracted industry partner support

  • Supported leading researchers and clinicians across the United States, Canada, Israel, and Europe

    • Research Areas Supported:

  • Understanding disease pathophysiology

  • Developing and refining gene therapy

  • Other therapeutic strategies development

  • Creating clinical rating scales for future trials

    • Current Strategic Focus Areas for Research Grants:

    Focus Areas for Funded Research:

    1. Clinical Trial Readiness - Biomarker development - Patient-centered outcome measures

    2. Advancing Therapeutic Approaches (including genetic medicine)
    - Gene editing
    - Cell therapy
    - Improved delivery systems (LNPs, optimized vectors, BBB crossing)

    3. Strategic Priority Areas (supported through advocacy and internal programs)
    - Carrier, prenatal, and newborn screening
    - Patient registry

    Eligible Diseases:

  • Tay-Sachs Disease

  • Canavan Disease

  • GM1 Gangliosidosis

  • Sandhoff Disease

    • Grant Award Range:

  • One-year grants: $2,000 to $75,000

  • Two-year grants: $20,000 to $140,000

  • Indirect costs may not exceed 5% of total grant award

  • Two-year grants reviewed after first year to assess progress before second-year funding

    • Geographic Scope: United States, Canada, Israel, and Europe

    Recent Major Award (2025):

  • In June 2025, NTSAD awarded its largest single research grant to date—$365,000—to support second-generation gene therapy study for GM2 at University of Massachusetts/Chan Medical School, led by Principal Investigator Miguel Sena-Esteves, PhD. This was made possible through collective generosity of NTSAD community and three mission-aligned foundations (Blu Genes Foundation, Cure Tay-Sachs Foundation, and Mathew Forbes Romer Foundation) which collectively awarded $870,000.

    • Contact Information:

  • Research inquiries: research@ntsad.org

  • NTSAD Main Address: 2001 Beacon Street, Suite 204, Boston, MA 02135

  • Phone: (617) 277-4463

  • Email: info@ntsad.org

  • Tax ID: #13-1912877

    • Past Grant Recipients (2022-2025):

  • 2024: Amanda Gross (Auburn) & Jessica Larsen (Clemson) - Nanoparticle DIVERT for Tay-Sachs/Sandhoff

  • 2024: Angela Gritti (IRCCS) - Enhancing hematopoietic stem cell gene therapy for GM2

  • 2023: Amanda Nagy & Florian Eichler (MGH) - Canavan disease neuroimaging characterization

  • 2023: Jennifer Kwon & Julie Kissell (UW) - Clinical rating scale for Late-Onset GM2

  • 2023: Dominic Gessler & Guangping Gao (UMass) - MRI-based outcome prediction using ML

  • 2022: Elise Townsend (MGH) - Infantile GM2 rating scale validation

  • 2022: Amanda Gross (Auburn) - Dual site AAV gene therapy for feline GM1

  • 2022: Michael Gelb & Hamid Khaledi (GelbChem) - Newborn screening assay development

    • How to Apply

    How to Apply

    Application Type: Request for Proposals (RFPs) by invitation only; open year-round

    Initial Contact:
    1. Contact NTSAD Research Team: Email research@ntsad.org to express interest in applying for funding
    2. Schedule Meeting: NTSAD will set up a meeting to discuss your research in detail
    3. Discuss Alignment: Explore how your research aligns with NTSAD's mission and strategic priorities

    Full Proposal Submission:
    1. Prepare Full Proposal: After initial consultation, develop a complete proposal addressing NTSAD's focus areas
    2. Submit Proposal: Submit through process discussed with NTSAD research team

    Review Process:

  • Proposals undergo rigorous review by:

    • - NTSAD research team
    - Members of NTSAD's Scientific Advisory Council
    - Expert consultants in the field as needed

    Evaluation Criteria:

  • Alignment with NTSAD's mission and strategic priorities

  • Scientific merit

  • Feasibility of proposed research

    • Approval:

  • All grant funding must be approved by NTSAD leadership and the Executive Committee of the board

  • Two-year grants reviewed after Year 1 for sufficient progress before Year 2 funding approved

    • Required Materials:

  • Full research proposal with project details

  • Alignment statement with NTSAD's mission and strategic priorities

  • Budget documentation (indirect costs limited to 5%)

  • Curriculum vitae for principal investigator

    • Contact for Applications:

  • Email: research@ntsad.org

  • Phone: (617) 277-4463

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    Focus Areas & Funding Uses

    Fields of Work

    science-research

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