National Down Syndrome Congress logo

National Down Syndrome Congress

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.

Financial Overview

From 2024 IRS Form 990-PF · View filing

Total Assets

$496K

+13.0% YoY

Annual Giving

$10K

-58.3% YoY

Grant Count

2

-33.3% YoY

Avg Grant Size

$5K

-37.5% YoY

About National Down Syndrome Congress

Based on IRS filings

National Down Syndrome Congress is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in CINCINNATI, OH. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $496K in total assets. In 2024, it awarded 2 grants totaling $10K. Net investment income was $13K.

Ready to take the next step with National Down Syndrome Congress?

Geographic Focus

Where this funder awards grants

Grant Distribution by State

5states

Cities

DenverMissoulaRoswellSilver SpringStillwater

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Qualifying Distributions
Net Investment Income
$0$532K$1M$2M$2M20202021202220232024
Metric202420232022
Total Assets$495,809$438,794$305,791
Revenue$1,734,848$1,931,676$1,419,457
Expenses$1,653,010$1,934,348$1,502,839
Qualifying Distributions
Net Investment Income$13,436$12,544$118,511
Distributable Amount

Giving Over Time

Total grant dollars and number of grants per year

$0$6K$12K$18K$24K0 grants20200 grants20211 grants20223 grants20232 grants2024

Grant Insights

How this funder distributes its grants

Top Recipients

Top 2 recipients in 2024

DOWN SYNDROME DIAGNOSIS …$5KASSOCIATION OF UNIVERSIT…$5K

Grant Size Distribution

6 grants across all recorded years

6<$50K$50–100K$100–250K$250–500K$500K–1M$1–5M$5M+

Giving History

Grant recipients and amounts by year

Among its reported 2024 grants, the largest include Down Syndrome Diagnosis Network ($5,000), Association of University Centers on Disabilities ($5,000).

RecipientPurposeAmount
DOWN SYNDROME DIAGNOSIS NETWORK STILLWATER, MNFINANCIAL ASSISTANCE$5,000
ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES SILVER SPRING, MDFINANCIAL ASSISTANCE$5,000

Leadership & Key People

Officers and directors from IRS filings

Compensation Overview

From 2024 IRS filing

STEPHANIE SMITH LEEPOLICY/ADVOCACY CO-DIRECTOR$112KJAMES HUDSONEXECUTIVE DIRECTOR$87K

From 2024 filing

NameTitleHoursCompensation
SEAN SMITHPRESIDENT10
ANTHONY ZANFORDINO1ST VICE PRESIDENT4
BEAU BROOKS2ND VICE PRESIDENT6
ZACHARY CARROLL3RD VICE PRESIDENT1
NICOLE BAUMER4TH VICE PRESIDENT1
MARILYN TOLBERTPAST PRESIDENT4
ANDRE PINEDATREASURER6
DAVID CHAPLINSECRETARY2
CRAIG BLACKBURNDIRECTOR0.5
BRADLEY CARLISLEDIRECTOR0.5
BETH FORAKERDIRECTOR0.5
HANNAH LACOURDIRECTOR0.5
MACARENA LIZAMA MDDIRECTOR0.5
NOEMI SPINAZZIDIRECTOR0.5
CLAIR WALLACEDIRECTOR0.5
JAMES HUDSONEXECUTIVE DIRECTOR40$86,973
STEPHANIE SMITH LEEPOLICY/ADVOCACY CO-DIRECTOR40$112,280

Subject Areas

Focus areas based on grantmaking activity

Frequently Asked Questions

What is National Down Syndrome Congress?

National Down Syndrome Congress is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in CINCINNATI, OH. It holds $496K in total assets as of 2024.

How large is National Down Syndrome Congress?

As of 2024, National Down Syndrome Congress holds $496K in total assets with $1.7M in annual revenue. It awarded 2 grants totaling $10K in 2024.

Where does National Down Syndrome Congress operate?

National Down Syndrome Congress has awarded grants in Colorado, Georgia, Maryland, Minnesota, Montana.

What size grants does National Down Syndrome Congress award?

In 2024, National Down Syndrome Congress awarded 2 grants totaling $10K — an average of about $5K per grant, based on its IRS Form 990 filings.

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 2020–2024.

Explore Open Grants

Browse active grant opportunities in National Down Syndrome Congress's focus areas in our free grants database

Related Funders

Similar funders by location and focus area

Data last updated April 2026. Sourced from IRS Form 990-PF filings.

What could you do with National Down Syndrome Congress on Grantable?

  • Assess strategic fit with your organization
  • Draft a tailored letter of inquiry
  • Find open RFPs from this funder
  • Monitor for new funding opportunities

Go from researching National Down Syndrome Congress to a real strategy.

Plan your approach