Huntington's Disease Society
New York, NY · EIN 13-3349872. Reported 324 grants totalling $12.5M to 70 organizations across tax years 2021-2025, on Form 990 Schedule I.
Does this grantmaker accept applications?
Its tax return does not say, and we will not guess. Private foundations file Form 990-PF, which asks outright whether they fund only organizations they select themselves -- 78% say yes, and that one answer is what lets the rest of this site tell you which foundations are worth approaching. Grantmaking charities like this one file a regular Form 990 instead, and the IRS never puts the question to them. Anyone claiming to know the answer from the filing is inventing it.
Three things in the filing do bear on it:
- What kind of organization it is. The IRS has no activity classification on file for this one, so we cannot tell you whether it is a community foundation or a single-institution support fund. The recipient list below is the better guide.
- How spread out its giving is. 70 distinct organizations, with 5% of the dollars going to the largest single recipient. That is genuinely spread out -- the mark of a funder making many independent decisions rather than underwriting one institution.
- How much its list changes. 97% of one year's grantees are funded again the next, across 4 year-to-year transitions. That is well above the 56% median for grantmaking charities, and above the 67% median for private foundations. It describes the organizations it already funds, not whether it would consider a new one.
How big are its grants?
The median reported grant is $31,000. Half of what it reported fell between $19,950 and $42,750; the smallest was $6,500 and the largest $300,000. If you are asking for materially more than the top of that range, you are asking the wrong organization.
Every organization it funded
This is the complete list from its filings, largest first. Recipients are grouped by the EIN the filer reported, not by name, so an organization that was typed differently in two years appears once rather than twice.
| Organization | Location | Total received | Grants | Years funded | Last |
|---|---|---|---|---|---|
| Regents of the University of California at San Diego | La Jolla, CA | $663,257 | 6 | 5 | 2025 |
| Mass General Brigham Incorporated | Somerville, MA | $659,611 | 9 | 5 | 2025 |
| Regents of the University of California at Irvine | Irvine, CA | $546,750 | 7 | 5 | 2025 |
| University of Texas Health Science Center | Dallas, TX | $537,707 | 6 | 5 | 2025 |
| Regents Univ of California | Los Angeles, CA | $473,174 | 6 | 5 | 2025 |
| Univ of Washington | Seattle, WA | $438,326 | 6 | 5 | 2025 |
| Vanderbilt University Medical Center | Nashville, TN | $392,480 | 6 | 5 | 2025 |
| Rush University Medical Center | Chicago, IL | $376,525 | 6 | 5 | 2025 |
| Regents of the University of California Davis Health | Sacramento, CA | $347,811 | 5 | 5 | 2025 |
| Salk Institute for Biological Studies | La Jolla, CA | $240,000 | 1 | 1 | 2022 |
| Trustees of the University of Pennsylvania | Philadelphia, PA | $239,500 | 5 | 5 | 2025 |
| Ohio State University Foundation | Columbus, OH | $239,435 | 5 | 5 | 2025 |
| Trustees of Columbia University | New York, NY | $226,148 | 5 | 5 | 2025 |
| University of Rochester | Rochester, NY | $226,000 | 5 | 5 | 2025 |
| University of Alabama Birmingham | Birmingham, AL | $223,351 | 5 | 5 | 2025 |
| Rector & Visitors of the University of Virginia | Charlottesvle, VA | $215,584 | 5 | 5 | 2025 |
| University of South Florida | Tampa, FL | $210,203 | 5 | 5 | 2025 |
| Northwestern University | Evanston, IL | $204,450 | 6 | 5 | 2025 |
| Washington University | St Louis, MO | $202,375 | 5 | 5 | 2025 |
| Beth Israel Deaconess Medical Center Inc | Charlestown, MA | $201,238 | 5 | 5 | 2025 |
| Movement Disorders Foundation | Arvada, CO | $198,950 | 5 | 5 | 2025 |
| Johns Hopkins University | Baltimore, MD | $195,300 | 5 | 5 | 2025 |
| Upmc | Pittsburgh, PA | $187,642 | 5 | 5 | 2025 |
| University of Iowa Department of Neurology | Iowa City, IA | $182,024 | 5 | 5 | 2025 |
| Albany Med Health System | Albany, NY | $180,960 | 5 | 5 | 2025 |
| New York University Grossman School of Medicine | New York, NY | $180,000 | 1 | 1 | 2024 |
| University of Central Florida Board of Trustees | Orlando, FL | $179,500 | 6 | 4 | 2025 |
| Georgetown University | Washington, DC | $175,500 | 5 | 5 | 2025 |
| UC Healthcare System | Cincinnati, OH | $166,250 | 5 | 5 | 2025 |
| Duke University | Durham, NC | $152,954 | 5 | 5 | 2025 |
| Regents of the University of Colorado | Denver, CO | $152,750 | 5 | 5 | 2025 |
| University of Utah | Salt Lake City, UT | $150,500 | 5 | 5 | 2025 |
| Dignity Health | San Francisco, CA | $147,000 | 5 | 5 | 2025 |
| Emory University | Atlanta, GA | $147,000 | 5 | 5 | 2025 |
| The Cleveland Clinic Educational Foundation | Independence, OH | $147,000 | 5 | 5 | 2025 |
| University of California San Francisco | San Francisco, CA | $145,250 | 5 | 5 | 2025 |
| University of Florida | Gainesville, FL | $144,250 | 5 | 5 | 2025 |
| University of Louisville Research Foundation Inc | Louisville, KY | $144,250 | 5 | 5 | 2025 |
| Ochsner Clinic Foundation | New Orleans, LA | $142,435 | 5 | 5 | 2025 |
| Hennepin Healthcare Research Institute | Minneapolis, MN | $139,758 | 5 | 5 | 2025 |
| Research Foundation of the City University of New York | New York, NY | $136,830 | 1 | 1 | 2023 |
| University of Miami | Coral Gables, FL | $123,000 | 5 | 5 | 2025 |
| Virginia Commonwealth University | Richmond, VA | $120,250 | 5 | 5 | 2025 |
| University Neurology Inc | Buffalo, NY | $111,750 | 5 | 5 | 2025 |
| Indiana University | Detroit, MI | $104,329 | 4 | 4 | 2025 |
| Regents of the University of Michigan | Ann Arbor, MI | $100,000 | 1 | 1 | 2025 |
| Phi Chi Medical Fraternity Inc | Charleston, SC | $97,750 | 5 | 5 | 2025 |
| Board of Regents of the University of Nebraska | Lincoln, NE | $96,750 | 5 | 5 | 2025 |
| University of Wisconsin - Madison | Madison, WI | $96,600 | 5 | 5 | 2025 |
| Stanford Health Care 227 | Stanford, CA | $96,385 | 5 | 5 | 2025 |
| University of Mississippi Medical Center | Jackson, MS | $95,294 | 5 | 5 | 2025 |
| Rowan University - School of Osteopathic Medicine | Stratford, NJ | $95,090 | 5 | 5 | 2025 |
| University of Arkansas for Medical Sciences | Little Rock, AR | $92,844 | 5 | 5 | 2025 |
| Sanford | Sioux Falls, SD | $91,726 | 5 | 5 | 2025 |
| Research Foundation for the State University of New York | Albany, NY | $90,053 | 5 | 5 | 2025 |
| Kansas University Endowment Assoc | Lawrence, KS | $89,619 | 5 | 5 | 2025 |
| Oregon Health & Science University | Portland, OR | $87,574 | 5 | 5 | 2025 |
| University of Vermont Medical Center Inc | Burlington, VT | $73,114 | 3 | 3 | 2023 |
| Henry Ford Health System | Detroit, MI | $73,000 | 4 | 4 | 2025 |
| Prisma Health-Midlands | Greenville, SC | $73,000 | 3 | 3 | 2025 |
| Erlanger Medical Center | Chattanooga, TN | $62,500 | 5 | 5 | 2025 |
| University Health System Inc | Knoxville, TN | $62,500 | 5 | 5 | 2025 |
| University of South Alabama | Mobile, AL | $54,088 | 4 | 4 | 2024 |
| University of Massachusetts | Worcester, MA | $49,500 | 3 | 3 | 2025 |
| The University of Vermont Health Network Inc | Burlington, VT | $49,000 | 2 | 2 | 2025 |
| University of Connecticut Health Center | Farmington, CT | $46,250 | 2 | 2 | 2025 |
| Selkirk Neurology Pllc | Spokane, WA | $39,500 | 4 | 4 | 2025 |
| University of South Carolina School Medicine | Columbia, SC | $37,117 | 2 | 2 | 2022 |
| Adventhealth Foundation Inc | Altamonte Spg, FL | $29,500 | 4 | 4 | 2025 |
| The Ohio State University | Columbus, OH | $12,494 | 1 | 1 | 2021 |
65 of 70 (93%) received money in more than one year over the 5 years we hold. Remember the $5,000 floor: an organization funded every year at $3,000 shows up here as never funded at all.
What kind of organizations it funds
By the activity category the IRS assigns each recipient, for the 42 of 70 recipients we could match to a registered organization. The categories are the IRS's, not ours -- Schedule I reports the recipient's EIN, so this is a lookup rather than a name match.
Giving by year
| Tax year | Grants reported | Total | Median grant |
|---|---|---|---|
| 2021 | 62 | $2,110,175 | $24,000 |
| 2022 | 63 | $2,346,833 | $31,000 |
| 2023 | 67 | $2,966,938 | $32,000 |
| 2024 | 67 | $3,016,159 | $33,000 |
| 2025 | 65 | $2,070,500 | $28,000 |
Tax years, not calendar years, and the most recent year is usually incomplete -- Form 990 arrives about a year after the year it covers, so a low final year means late paperwork rather than a grantmaker winding down.
Where its money goes
21% of its giving went to organizations in California. Community foundations and federated funds are usually the most geographically bounded funders there are -- being outside the footprint is normally disqualifying in a way that a weak programme fit is not.
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Funders that support the same organizations
These grantmakers and private foundations gave to organizations this one also funded. Shared grantees are a sign of overlapping priorities and nothing more: they do not show that any of these funders would consider a new organization. Each page says what its filings show.
How to approach this grantmaker
- Look for a published programme first. Unlike most private foundations, organizations of this kind often do run open, deadlined grant cycles with written guidelines. Its own website is the authority on that; this page is the authority on who it has actually paid.
- Check you are its size. The median reported grant is $31,000 -- and because grants under $5,000 need not be reported, it very likely writes smaller cheques than this page can see.
- Check you are in its geography. Its giving concentrates in California.
- Read the recipient list for organizations like yours. If nothing on it resembles your work, that is a real answer and a cheap one to get.
Related guides
Where these numbers come from
Everything above is taken from Huntington's Disease Society's own Form 990 Schedule I filings, which the IRS publishes in bulk. We used 5 returns (tax years 2021-2025). Grant figures are from its returns. Recipient classifications, the concentration and retention figures and the funders that support the same organizations are our own calculations from them, described in how we build this.
On its most recent return it told the IRS it made grants to 65 section 501(c)(3) organizations and 0 other organizations. That is the filer's own count for one year; the totals above cover every year we hold.
Address of record on the latest return: 505 Eighth Avenue Suite 1402, New York, NY, 10018.
EIN 13-3349872 · See the original filings on ProPublica · How we build this
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