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National Down Syndrome Congress

Public charity · Grantmaker Cincinnati, OH EIN: 51-0163631 Website

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.

Key facts about National Down Syndrome Congress

In short: National Down Syndrome Congress gave $15K across 3 grants in 2025 (avg $5K), top state New York. Source: 2025 IRS Form 990.

EIN
51-0163631
Latest 990 filing
Form 990, 2025
Annual giving (2025)
$15,300
Grants made (2025)
3
Average grant
$5,100
Median grant
$5,100
Total assets
$744,605
Primary geography
New York (33% of itemized 2025 grant dollars)

Data from IRS Form 990, 2025; updated September 2026.

Financial Overview

From 2025 IRS Form 990 · View filing

Total Assets

$745K

+50.2% YoY

Annual Giving

$15K

+53.0% YoY

Grant Count

3

+50.0% YoY

Avg Grant Size

$5K

+2.0% YoY

How National Down Syndrome Congress gives

  • Giving fell 35% from 2022 to 2025. Method

From the foundation's IRS Form 990 filings. Methodology.

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.

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

7states

Share of 2025 grant dollars across all 3 itemized grants.

Cities

StillwaterDenverKnoxvilleMissoulaMt BerryRoswellSilver SpringSyracuse

Giving Over Time

Total grant dollars and number of grants per year

$0$10K$20K$30K0 grants2020 0 grants2021 1 grant2022 3 grants2023 2 grants2024 3 grants2025

From 2022 to 2025, annual grant giving ranged from $10K (2024) to $24K (2023). In 2025 it made 3 grants totaling $15K.

Grant Insights

How this funder distributes its grants

Top Recipients

Top 3 recipients in 2025

Syracuse University: $5KSyracuse University$5KUniversity of Tennessee Foundation: $5KUniversity of TennesseeFoundation$5KBerry College: $5KBerry College$5K

The largest 2025 recipient was Syracuse University ($5K). Together the top 3 received $15K.

Grant Size Distribution

9 grants across all recorded years

9<$50K$50–100K$100–250K$250–500K$500K–1M$1–5M$5M+

The most common grant size was under $50K: 9 grants of 9 (100%).

Giving History

Grant recipients and amounts by year

RecipientPurposeAmount
Syracuse University Syracuse, NYFinancial Assistance$5,100
University of Tennessee Foundation Knoxville, TNFinancial Assistance$5,100
Berry College Mt Berry, GAFinancial Assistance$5,100

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Net Investment Income
$0$1M$2M$3M2020 2021 2022 2023 2024 2025
Metric202520242023
Total Assets$744,605$495,809$438,794
Revenue$2,091,467$1,734,848$1,931,676
Expenses$1,874,625$1,653,010$1,934,348
Net Investment Income$30,980$13,436$12,544

Data update history

When this profile's IRS filing data changed on Grantable

  1. Updated Form 990 for fiscal year 2022 (received by the IRS November 14, 2024)
  2. Added Form 990 for fiscal year 2025 (received by the IRS May 5, 2026)
  3. IRS filings on file for fiscal years 2020–2024

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

James Hudson — Executive Director: $157KJames HudsonExecutive Director$157K

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.

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