Families of Spinal Muscular Atrophy
Schaumburg, IL · EIN 36-3320440. Reported 96 grants totalling $7,983,736 to 32 organizations across tax years 2021-2024, 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. For Families of Spinal Muscular Atrophy, by its IRS classification it exists to support one specific institution in diseases & disorders -- typically its own parent hospital, university or school (NTEE G110).
- How spread out its giving is. 32 distinct organizations, with 17% 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. 78% of one year's grantees are funded again the next, across 3 year-to-year transitions. That is well above the 57% median for grantmaking charities, and above the 67% private foundations manage. This list is close to settled, so a newcomer has to displace someone rather than fill a gap.
How big are its grants?
The median reported grant is $41,932. Half of what it reported fell between $29,078 and $108,049; the smallest was $915 and the largest $411,657. 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 |
|---|---|---|---|---|---|
| Childrens Hospital Corporation | Boston, MA | $1,370,544 | 7 | 4 | 2024 |
| Trustees of Columbia University | New York, NY | $1,316,577 | 8 | 4 | 2024 |
| The Board of Trustees of the Leland Stanford Junior University | Stanford, CA | $1,164,331 | 7 | 4 | 2024 |
| University of Rochester | Rochester, NY | $836,500 | 7 | 4 | 2024 |
| Childrens Research Institute | Washington, DC | $728,638 | 8 | 4 | 2024 |
| Ann & Robert H Lurie Childrens Hospital of Chicago | Chicago, IL | $307,490 | 1 | 1 | 2024 |
| Johns Hopkins University | Baltimore, MD | $249,085 | 2 | 2 | 2024 |
| The Ohio State University | Columbus, OH | $230,873 | 5 | 3 | 2023 |
| The Medical College of Wisconsin Inc | Milwaukee, WI | $150,000 | 2 | 2 | 2024 |
| Gillette Childrens Specialty Health Care | Saint Paul, MN | $125,800 | 3 | 3 | 2023 |
| University of Utah | Salt Lake City, UT | $116,674 | 3 | 3 | 2023 |
| University of Texas | Dallas, TX | $116,300 | 2 | 2 | 2022 |
| Regents of the University of Michigan | Ann Arbor, MI | $115,397 | 2 | 2 | 2023 |
| Childrens Healthcare of Atlanta Inc | Brookhaven, GA | $107,000 | 3 | 3 | 2023 |
| Seattle Childrens Hospital | Seattle, WA | $98,200 | 2 | 2 | 2022 |
| Duke University | Durham, NC | $97,510 | 3 | 3 | 2023 |
| Phoenix Childrens Hospital | Phoenix, AZ | $84,650 | 2 | 2 | 2022 |
| Washington University | St Louis, MO | $83,079 | 2 | 2 | 2023 |
| Arkansas Childrens Hospital Research Institute | Little Rock, AR | $81,843 | 3 | 3 | 2023 |
| University of Alabama of Birmingham | Birmingham, AL | $79,654 | 3 | 3 | 2023 |
| Mass General Brigham Incorporated | Somerville, MA | $75,000 | 1 | 1 | 2022 |
| Regents Univ of California | Los Angeles, CA | $59,078 | 2 | 2 | 2023 |
| Regents of the University of Colorado | Denver, CO | $51,849 | 2 | 2 | 2023 |
| University of Miami | Coral Gables, FL | $50,849 | 2 | 2 | 2023 |
| Connecticut Childrens Medical Center | Hartford, CT | $44,981 | 3 | 3 | 2023 |
| Case Western Reserve University | Cleveland, OH | $44,169 | 1 | 1 | 2024 |
| Yale University | New Haven, CT | $39,902 | 3 | 3 | 2023 |
| Advocate Health and Hospitals Corporation | Downers Grove, IL | $38,000 | 2 | 2 | 2022 |
| Baylor College of Medicine | Houston, TX | $30,000 | 1 | 1 | 2021 |
| Northwestern University | Evanston, IL | $30,000 | 1 | 1 | 2021 |
| University of New Mexico | Albuquerque, NM | $30,000 | 1 | 1 | 2021 |
| Vanderbilt University Medical Center | Nashville, TN | $29,763 | 2 | 2 | 2023 |
26 of 32 (81%) received money in more than one year over the 4 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 the money was for
Taken verbatim from the purpose column of its filings, largest first. This is the closest thing to a statement of what it funds, in its own words.
- Boston Children's Hospital
PNCR NETWORK & BASIC RESEARCH - Trustees of Columbia University - Nyc
RESEARCH - CLINICAL TRIALS
What kind of organizations it funds
By each recipient's own IRS classification, for the 26 of 32 recipients we could match to a registered organization. These are assigned categories, not our guesses -- 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 | 29 | $2,269,318 | $37,900 |
| 2022 | 30 | $2,372,768 | $41,700 |
| 2023 | 28 | $1,539,076 | $29,500 |
| 2024 | 9 | $1,802,574 | $230,000 |
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
27% of its giving went to organizations in New York. 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.
Down to the city
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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 the strongest signal available that two funders have overlapping priorities -- and a funder already backing your peers is a far warmer prospect than one that merely lists your cause.
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 $41,932 -- 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 New York.
- 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 Families of Spinal Muscular Atrophy's own Form 990 Schedule I filings, which the IRS publishes in bulk. We used 4 returns (tax years 2021-2024). Nothing here is scraped, inferred or estimated.
On its most recent return it told the IRS it made grants to 9 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: 50 E Commerce Dr 90, Schaumburg, IL, 60173.
EIN 36-3320440 · See the original filings on ProPublica · How we build this
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