Funding search · Down syndrome · Massachusetts
Who funds Down syndrome work in Massachusetts
15 funders have a record of paying for Down syndrome work by Massachusetts recipients: 58 grants totaling $17.5M, most recently in 2025 — mostly private foundations, plus grantmaking charities. The largest by matched giving are Usher Syndrome Society ($950,000), International Rett Syndrome Foundation ($631,250) and Rosetime Foundation ($3.0M).
From IRS Form 990-PF and 990 Schedule I filings, 2019–2025. Grants already paid to Massachusetts recipients — evidence of what these funders back, not open calls.
Usher Syndrome SocietyNeedham, MACharity · may take applications
7 matching grants · $950,000 · through 2025Largest: $20,000 to Usher Syndrome Coalition — research usher syndrome
International Rett Syndrome FoundationCincinnati, OHCharity · may take applications
7 matching grants · $631,250 · through 2024Largest: $300,000 to The General Hospital Corporation dba Massachusetts General Hospital — rett syndrome research
Largest: $870,000 to LUMIND IDSC — funding for the down syndrome research
Largest: $76,800 to USHER 1F COLLABORATIVE — to fund medical research to find an effective treatment to save or restore the vision of those with usher syndrome type 1f.
Givengain Foundation USAFort Lauderdale, FLCharity · may take applications
5 matching grants · $384,306 · through 2024Largest: $122,605 to Massachusetts Down Syndrome Congress — program support
Phelan McDermid Syndrome FoundationOsprey, FLCharity · may take applications
3 matching grants · $271,392 · through 2024Largest: $55,000 to Northeastern University — to support a project seeking to expand a new natural communication sampling protocol called rosco (rapid online sample of communication). rosco is designed to elicit meaningful sam…
Largest: $2.0M to MASSACHUSETTS GENERAL HOSPITAL — work in the down syndrome program endowed fund
Largest: $6.4M to MASSACHUSSETTS INSTITUTE OF TECHNOLOGY — to establish a down syndrome research center building with the aim of funding science, innovation and education to advance understanding, ability, and inclusion.
The Bruce H and Rosalie N Rosen FamilyWest Bloomfield, MI
3 matching grants · $201,340 · through 2024Largest: $100,670 to MASSACHUSETTS GENERAL HOSPITAL — support tourette's syndrome research
Dravet Syndrome FoundationCherry Hill, NJCharity · may take applications
2 matching grants · $177,500 · through 2025Largest: $100,000 to The Broad Institute of MIT and Harvard — in conjunction with the children's hospital of philadelphia, base editing for the treatment and prevention of dravet syndrome. this project aims to develop a precision gene-editing…
Riaan Research InitiativeOakland Gardens, NYCharity · may take applications
2 matching grants · $2.5M · through 2024Largest: $2.2M to UMASS Chan Medical School — study of cockayne syndrome with the ultimate aim of developing an effective gene therapy treatment
Largest: $30,000 to MASSACHUSETTS DOWN SYNDROME — human services
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Start with one paperBroader: Down syndrome funders nationally · all Massachusetts-based grantmakers