Grants for Down Syndrome Organizations 2026: Funders

Down syndrome source review, Grantsights, October 31, 2026: Grantsights checked the Centers for Disease Control and Prevention (CDC) Down syndrome facts page (opens in a new tab), the early intervention definition in 34 CFR 303.21 (opens in a new tab), the Administration for Community Living (ACL) page on State Councils on Developmental Disabilities (opens in a new tab), the National Institutes of Health (NIH) INCLUDE Project page (opens in a new tab) and the IRS page about Form 990-PF (opens in a new tab), then checked them against foundation filings. Where official sources stop: none of them counts how many families in your county have a child with Down syndrome or how many adults with Down syndrome live there, and that's the number your case statement most needs.

Grants for Down Syndrome Organizations Start With 1 Fact From CDC

According to CDC, about 5,775 babies born in the U.S. each year have Down syndrome, and it's the most common chromosomal condition diagnosed in the country. That number, which works out to roughly 16 births a day, gives a local group its starting math: divide it by your state's share of U.S. births and you have a rough count of new families who could use a welcome packet, a new parent mentor and a playgroup each year. Present it as an estimate, and say where it came from.

Down syndrome groups aren't the same as broad disability agencies, and the difference helps you pitch. This table compares them.

The third row is where many Down syndrome groups stand out. If your group doesn't bill Medicaid or hold state contracts, a foundation gift pays for core work, and funders like knowing their money isn't just backfilling a government contract.

Who Gave to Down Syndrome Groups: 990-PF Filings

Foundations reporting grants on IRS Form 990-PF are a main source for Down syndrome organizations, along with Buddy Walks, galas and individual donors. According to IRS guidance, the 990-PF is the yearly return where a private foundation lists the grants it paid, so each gift below can be traced. Grantsights analysis of 990-PF youth grants pulled October 31, 2026 found 46 foundations that made 71 grants to Down syndrome organizations, totaling $1,277,361, an average of about $18,000. The largest gifts in the filings, across all causes, show the range:

For example, Down Syndrome of Southern Kentucky received $100,000 from The Hogue Family Foundation in 2023 for facility capital and adult education, then another $100,000 in 2025 for children's activities. One organization in Kansas, the Down Syndrome Society of Wichita, drew $75,000 from The Fidelity Bank Foundation in 2025 for a learning kitchen, a concrete project a bank board could picture. The Murdock trust's grant paid for a staff position, which is rarer and worth noting: some funders will pay salaries if the role brings in new partners.

Down syndrome youth grants by state

These figures come from the October 31, 2026 Grantsights pull of 990-PF youth grants, and states are where the recipient sits. The pull found youth funders of Down syndrome groups in 22 states, and 8 had at least 3. Small state counts are normal here. A state with 3 youth funders on this list may have many more Down syndrome funders whose gifts carry no tag.

California's Down syndrome funders

California's 6 youth foundations made 11 grants worth $248,198. The free preview on the Grantsights youth funder list for California leads with The Fansler Foundation, which says it takes requests. Its filings show $39,700 to the Down Syndrome Association of Central California in Fresno in 2024 for services for youth with Down syndrome, $33,400 in 2022 to help children and their families, and $17,800 in 2023 for children's programs. Next in that preview, the Noll Foundation gave the Down Syndrome Connection of the Bay Area in Danville $40,000 in 2024 to help children with Down syndrome.

Why the Youth List, With a Warning

Most foundation gifts to Down syndrome groups carry no cause tag at all, so any single cause list shows only part of the funders, and the youth list's $1,277,361 is a floor, not a ceiling. In Grantsights pulls from October 30 to 31, 2026, Down syndrome gifts from 839 foundations had no cause tag. Among tagged gifts, education (53 foundations, 6 states with 3 or more) and youth (52 foundations, 8 states) ran almost even, with health at 36 foundations in 10 states. These per-cause counts weren't hand-checked across causes and are given here only to explain the list choice. Youth has the widest state spread and fits groups whose programs serve children and families, which is most of them.

Statewide youth figures come from Grantsights analysis of 990-PF filings pulled October 29, 2026, and they cover all youth giving, not Down syndrome alone. Our honest read is that the youth list is your best bet for a first ask: thousands of youth funders in each large state have never given to a Down syndrome group, and a playgroup, teen club or summer camp is a youth program they already understand.

A single-state Grantsights funder list is $29, a full year with every cause is $99, and you can ask for your money back within 30 days if a list isn't useful. For federal and state notices where a Down syndrome group might partner with a school district or disability agency, search the Grantsights grant database.

What CDC, ACL and NIH Don't Tell You About Down Syndrome Groups

Across the 4 federal pages Grantsights checked, none offers general operating grants to a local Down syndrome association. These 4 points show where federal policy still helps you.

1. Early intervention starts at diagnosis. The federal rule at 34 CFR 303.21 (opens in a new tab) defines an infant or toddler with a disability to include a child under 3 with a diagnosed condition that has a high probability of resulting in developmental delay, and it lists chromosomal abnormalities. A baby with Down syndrome doesn't have to show a delay first. New parent programs that walk families into their state's early intervention system are filling a real gap, and funders understand that pitch.
2. State Councils on Developmental Disabilities fund local projects. According to ACL, there are 56 Councils across the states and territories, and at least 60% of each Council's members must be people with intellectual and developmental disabilities or close family members. The ACL page highlights local programs a state Council paid for, such as a walking club in South Carolina. Ask your Council when its next funding notice opens, and offer a parent from your group for a seat.
3. INCLUDE funds research, not support groups. NIH launched the INCLUDE Project in June 2018 after a congressional directive, to study conditions that affect people with Down syndrome such as Alzheimer's disease, celiac disease and congenital heart disease. Its money goes to researchers. Your group's role is helping families find studies, which can lead to partnerships with a university, not a direct grant.
4. CDC points families to community groups. The CDC page lists GiGi's Playhouse as a resource for people with Down syndrome and their families. Quote that in proposals; a federal agency naming your type of group is useful proof.

What most guides skip is the adult years. Funders gave GiGi's Playhouse $35,000 from the Firefly Scientists Foundation in 2024 for programming for adults with Down syndrome, and the Westlake Health Foundation gave $50,000 in 2025 for a GiGiFIT fitness pilot aimed at delaying Alzheimer's disease. Adult programs are a gap many associations underestimate.

Costing a Down Syndrome Program for a Grant Request

Many Down syndrome groups run on volunteers, and that hides real costs; a $3,000 program grant rarely covers the staff time behind it. A grant budget that lists only supplies will look thin. This table is illustrative, not data: costs vary by region and program size.

Report cost per family served and program hours per child or adult. For example, the Innovating Worthy Projects Foundation gave the Down Syndrome Connection of the Bay Area $10,000 in 2024 for speech therapy tools for children with Down syndrome and apraxia. A grant line that specific is easy for a board to approve.

6 Down Syndrome Projects Foundations Have Paid For

Each of these 6 projects matches a grant in the October 30 to 31, 2026 pulls, and they show the range of what a small group can ask for.

1. Youth sports. The Dick's Sporting Goods Foundation gave the Down Syndrome Association of Central Ohio $5,000 and the Down Syndrome Association of Greater Cincinnati $4,000 in 2024 for youth sports.
2. Summer learning. The GPD Group Employees Foundation gave Down Syndrome of Louisville $5,000 in 2025 for its Summer Education Enrichment camp.
3. Teen social clubs. The Kohler Foundation gave the Down Syndrome Association of Wisconsin $3,000 for its teen hang out club in 2024.
4. New family programs. The Dean and Margaret Lesher Foundation gave the Down Syndrome Connection of the Bay Area $10,000 in both 2023 and 2024 for its New and Young Families Program.
5. Children and youth support. The W.P. and Bulah Luse Foundation gave the Down Syndrome Guild of Dallas $5,000 in 2024.
6. A new or bigger space. The Decker Foundation's $150,000 helped GiGi's Playhouse in Rochester renovate and relocate.

If your group runs camps, grants for summer camps lists those funders, and sports programs should read grants for adaptive sports programs.

Common Mistakes in Down Syndrome Grant Requests

These 5 mistakes come up when a Down syndrome group writes like a fundraiser instead of a program.

• Pitching awareness instead of services. Funders pay for programs with outcomes; a common mistake is asking for Buddy Walk costs without saying what the walk funds.
• Leaving out adults. A red flag for some funders is a group that serves children only while families of adults ask for help.
• Underestimating staff needs. Volunteer-run groups often burn out; the Murdock trust's grant for a partnerships manager shows staff asks can win.
• Sending a health funder a playgroup request. Match the program to the funder's cause. Health funders backed fitness and medical programs; youth funders backed clubs, camps and sports.
• Sizing asks blindly. A $5,000 median youth grant in many states means a first ask of $50,000 rarely fits. Check each funder's typical gift with how to read a 990-PF.

A Down Syndrome Group's Funding Calendar

This 12-month plan fits around October, which is Down Syndrome Awareness Month, and the Buddy Walk season.

Related Guides for Down Syndrome Groups

These 4 pages cover programs Down syndrome groups often run or partner with.

Families who need a break can find help through programs in grants for respite care programs. Groups that add music classes can compare funders in grants for music therapy programs. And if your group partners with a riding center, grants for therapeutic riding programs covers that separate set of funders, which this guide's counts leave out. Associations that bring therapy dogs to reading or social programs can compare funders in grants for pet therapy programs.

FAQ: Common Questions

These 6 questions come up most often from Down syndrome groups.

Is there a federal grant for Down syndrome organizations? Not for general support; your state Council on Developmental Disabilities is the closest public source.

How many foundations fund Down syndrome organizations? 46 in Grantsights' search of 990-PF youth grants pulled October 31, 2026, and more give without a cause tag.

Why does Grantsights point Down syndrome groups to the youth list? Youth had the widest state spread among tagged gifts and fits family programs.

Does a baby with Down syndrome qualify for early intervention? The federal rule names chromosomal abnormalities as a qualifying diagnosed condition.

What's a typical grant to a Down syndrome group? About $18,000 on average in the youth pull, with many gifts of $3,000 to $5,000.

Do GiGi's Playhouse locations get foundation grants? Yes, including gifts of $500,000 and more.

Sources

• CDC: About Down Syndrome (opens in a new tab)
• eCFR: 34 CFR 303.21, Infant or Toddler With a Disability (opens in a new tab)
• Administration for Community Living: State Councils on Developmental Disabilities (opens in a new tab)
• NIH: INCLUDE Project (opens in a new tab)
• IRS: About Form 990-PF (opens in a new tab)