National Down Syndrome Congress
The mission of the National Down Syndrome Congress is to provide information, advocacy, and support concerning all aspects of life for individuals with down syndrome.ndsc exists with the purpose to promote the interests of people with down syndrome, to educate through awareness, to advocate and ensure their rights are recognized and protected, to empower, and to inspire and reshape the way people understand and experience down syndrome.the vision of the ndsc is a world with equal rights and opportunities for people with down syndrome.
National Down Syndrome Congress at a glance
In short: National Down Syndrome Congress gave $15K across 3 grants in 2025 (avg $5K), top state New York. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $15,300
- +53.0% vs 2024
- Grants made (2025)
- 3
- +50.0% vs 2024
- Average grant
- $5,100
- +2.0% vs 2024
- Median grant
- $5,100
- Total assets
- $744,605
- +50.2% vs 2024
- Primary geography
- New York (33% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who National Down Syndrome Congress funds
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2025
The largest 2025 recipient was Syracuse University ($5K). Together the top 3 received $15K.
Grant Size Distribution
9 grants across all recorded years
The most common grant size was under $50K: 9 grants of 9 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 3 itemized grants.
Cities
How National Down Syndrome Congress gives
- Giving fell 35% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2022 to 2025, annual grant giving ranged from $10K (2024) to $24K (2023). In 2025 it made 3 grants totaling $15K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Syracuse University Syracuse, NY | Financial Assistance | $5,100 |
| University of Tennessee Foundation Knoxville, TN | Financial Assistance | $5,100 |
| Berry College Mt Berry, GA | Financial Assistance | $5,100 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $744,605 | $2,091,467 | $1,874,625 | $15,300 | 3 | $30,980 |
| 2024 | $495,809 | $1,734,848 | $1,653,010 | $10,000 | 2 | $13,436 |
| 2023 | $438,794 | $1,931,676 | $1,934,348 | $24,000 | 3 | $12,544 |
| 2022 | $420,223 | $1,401,237 | $1,586,655 | $23,500 | 1 | $10,584 |
| 2021 | $533,990 | $732,155 | $930,611 | — | — | $73,846 |
| 2020 | $765,872 | $876,542 | $961,366 | — | — | $24,082 |
About National Down Syndrome Congress
Based on IRS filings
National Down Syndrome Congress is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Cincinnati, OH. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $745K in total assets. In 2025, it awarded 3 grants totaling $15K. Net investment income was $31K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
National Down Syndrome Congress is led by James Hudson, Executive Director on every filing since 2024; 1 of 17 officers listed in 2025 is compensated.
Officers on the 2025 filing
James Hudson
Executive Director
On filings since 2024
40 hrs/week
$87K (2024) → $157K (2025)
Sean Smith
President
Director → President, 2023
On filings since 2020
10 hrs/week
No compensation reported
Bradley Carlisle
Director
On filings since 2023
0.5 hrs/week
No compensation reported
Noemi Spinazzi
Director
On filings since 2023
0.5 hrs/week
No compensation reported
Beth Foraker
Director
On filings since 2024
0.5 hrs/week
No compensation reported
Clair Wallace
Director
On filings since 2024
0.5 hrs/week
No compensation reported
Hannah Lacour
Director
On filings since 2024
0.5 hrs/week
No compensation reported
Anna Ebensen
Director
New on the 2025 filing
0.5 hrs/week
No compensation reported
Candice Moffit
Director
New on the 2025 filing
0.5 hrs/week
No compensation reported
Jeff Scott
Director
New on the 2025 filing
0.5 hrs/week
No compensation reported
Kishore Vellody
Past President
Immediate Past President → Past President, 2025
On filings since 2020
4 hrs/week
No compensation reported
Nicole Baumer
3rd Vice President
Director → 4th Vice President, 2024
4th Vice President → 3rd Vice President, 2025
On filings since 2020
1 hr/week
No compensation reported
Zachary Carroll
4th Vice President
Director → 3rd Vice President, 2024
3rd Vice President → 4th Vice President, 2025
On filings since 2020
1 hr/week
No compensation reported
Andre Pineda
Treasurer
On filings since 2023
6 hrs/week
No compensation reported
Anthony Zanfordino
1st Vice President
On filings since 2023
4 hrs/week
No compensation reported
Beau Brooks
2nd Vice President
On filings since 2023
6 hrs/week
No compensation reported
David Chaplin
Secretary
On filings since 2023
2 hrs/week
No compensation reported
Former officers (24)
- Former: Macarena Lizama MD (2020–2024) — Director
- Former: Craig Blackburn (2023–2024) — Director
- Former: Marilyn Tolbert (2023–2024) — Past President
- Former: Stephanie Smith Lee (2024) — Policy & Advocacy Co-Director
- Former: Andrea Holmes (2020–2023) — Director
- Former: Dana Halle Esq. (2020–2023) — 3rd Vice President
- Former: Daniel Chaplin (2020–2023) — Director
- Former: Jenny Stone (2021–2023) — Director
- Former: Jordan Kough (2022–2023) — Executive Director
- Former: Mitchel Rothholz Rph (2023) — Director
- Former: Barb Helm (2020–2022) — Dirctor
- Former: Bruce Bennett (2020–2022) — Director
- Former: John Dickerson (2020–2022) — Director
- Former: Kate Dougherty (2020–2022) — 1st Vice President
- Former: Lora Olson (2020–2022) — Director
- Former: Lori McKee (2020–2022) — Director
- Former: Megan Smulski (2020–2022) — Secretary
- Former: Mitchel Rothholz (2020–2022) — 3rd Vice President
- Former: Shauntel Neal-Howe (2020–2022) — President
- Former: Valerie Williams (2020–2022) — 2nd Vice President
- Former: Maggie Erickson Kilgannon (2021–2022) — Director
- Former: David Tolleson (2020–2021) — Executive Director
- Former: Mary Warm (2020–2021) — Dirctor
- Former: Maggie Erickson (2020) — Director
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $157K, to James Hudson (Executive Director).
Frequently asked questions about National Down Syndrome Congress
How much does National Down Syndrome Congress give each year?
National Down Syndrome Congress gave $15K across 3 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $10K across 2 grants.
What is National Down Syndrome Congress's typical grant size?
National Down Syndrome Congress's median grant in 2025 was $5,100, and its average grant was $5,100, across 3 grants on its 2025 IRS Form 990.
Where does National Down Syndrome Congress give grants?
National Down Syndrome Congress's top state is New York, with 33% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Tennessee (33%) and Georgia (33%).
Does National Down Syndrome Congress give general operating support?
Not in 2025: none of the 3 grants with a stated purpose on National Down Syndrome Congress's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Financial Assistance" (3 grants).
How large is National Down Syndrome Congress?
National Down Syndrome Congress reported $745K in total assets on its 2025 IRS Form 990. Its revenue that year was $2.1M.
What is National Down Syndrome Congress?
National Down Syndrome Congress is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Cincinnati, OH. It holds $745K in total assets as of 2025.
What is National Down Syndrome Congress's EIN?
National Down Syndrome Congress's EIN (Employer Identification Number) is 51-0163631. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(3)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2022 (received by the IRS November 14, 2024)
- Added Form 990 for fiscal year 2025 (received by the IRS May 5, 2026)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work National Down Syndrome Congress funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in National Down Syndrome Congress's focus areas in our free grants database
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