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.
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.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| 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
Grant Insights
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2024
Grant Size Distribution
6 grants across all recorded years
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).
| Recipient | Purpose | Amount |
|---|---|---|
| DOWN SYNDROME DIAGNOSIS NETWORK STILLWATER, MN | FINANCIAL ASSISTANCE | $5,000 |
| ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES SILVER SPRING, MD | FINANCIAL ASSISTANCE | $5,000 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| SEAN SMITH | PRESIDENT | 10 | — |
| ANTHONY ZANFORDINO | 1ST VICE PRESIDENT | 4 | — |
| BEAU BROOKS | 2ND VICE PRESIDENT | 6 | — |
| ZACHARY CARROLL | 3RD VICE PRESIDENT | 1 | — |
| NICOLE BAUMER | 4TH VICE PRESIDENT | 1 | — |
| MARILYN TOLBERT | PAST PRESIDENT | 4 | — |
| ANDRE PINEDA | TREASURER | 6 | — |
| DAVID CHAPLIN | SECRETARY | 2 | — |
| CRAIG BLACKBURN | DIRECTOR | 0.5 | — |
| BRADLEY CARLISLE | DIRECTOR | 0.5 | — |
| BETH FORAKER | DIRECTOR | 0.5 | — |
| HANNAH LACOUR | DIRECTOR | 0.5 | — |
| MACARENA LIZAMA MD | DIRECTOR | 0.5 | — |
| NOEMI SPINAZZI | DIRECTOR | 0.5 | — |
| CLAIR WALLACE | DIRECTOR | 0.5 | — |
| JAMES HUDSON | EXECUTIVE DIRECTOR | 40 | $86,973 |
| STEPHANIE SMITH LEE | POLICY/ADVOCACY CO-DIRECTOR | 40 | $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
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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