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Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

NTSAD Research Initiative

What is the NTSAD Research Initiative?

The NTSAD Research Initiative is our comprehensive strategic research program that funds cutting-edge efforts to find a cure and promote scientific collaboration to accelerate these efforts. NTSAD has supported ground breaking research since our inception in 1957. View Our History to read about our early efforts that resulted in carrier screening. 

In 2002, NTSAD recommitted itself to finding a cure and founded the Research Initiative; 48 projects and $3.1 million later in grant awards, we are closer than ever to a cure. Several projects have led to larger NIH grants resulting in over $10 Million toward finding a cure!

Who Runs the Research Initiative?

Two teams of committed and passionate people, the Scientific Advisory Committee (SAC) and the Research Initiative Committee, collaborate to evaluate research proposals and award the most promising efforts. The Scientific Advisory Committee is comprised of world-class researchers and clinicians that are leading experts in lysosomal and leukodystrophy diseases. Our Research Initiative Committee is made up of passionate and driven people directly affected by these diseases.   View the Library for a complete list of our most recently funded research grants, as well as historical grant information.

How are Grants Awarded, Administered and Managed?

Each year NTSAD issues a Request for Proposals (RFP) for innovative research projects that can lead to treatments for lysosomal or leukodystrophy diseases impacting the central nervous system. See Apply for a Grant.

NTSAD is well positioned to attract the most promising research grant proposals because of its relationships with academic medical centers, government and biotech companies.  NTSAD often partners with other patient advocacy groups to expand the number of projects that can be funded and the impact of funding.

All grant proposals are reviewed and evaluated by members of the NTSAD Scientific Advisory Committee and other qualified scientists. Then the Research Initiative Committee reviews the expert evaluations and makes the final award selection.

Once the grants are awarded, the researcher and their institution sign an agreement that they will agree to the terms and conditions in the NTSAD's Research Initiative Grant Policies. These policies include intellectual property clauses and related terms to protect the interests of families. The policies also outline the system for making the grant payments in installments following approved progress reports.

This process ensures that the highest quality science and projects with the most meaningful outcomes are awarded.  In addition, the process holds the researchers accountable for following through appropriately with the proposed project.  

Family Foundation Affiliates

NTSAD is proud to manage the research grant process as well as raising needed dollars; yet, we tip our hat to our family foundation affiliates for their passion and drive to raise the majority of funds.

Cameron & Hayden Lord Foundation
Mathew Forbes Romer Foundation

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