Down Syndrome Diagnosis Network
To connect support and provide accurate information to families with a down syndrome diagnosis
Down Syndrome Diagnosis Network at a glance
In short: Down Syndrome Diagnosis Network gave $11K across 1 grant in 2025 (avg $11K), mostly in Georgia. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $10,857
- -21.0% vs 2024
- Grants made (2025)
- 1
- +0.0% vs 2024
- Average grant
- $10,857
- -21.0% vs 2024
- Median grant
- $10,857
- Total assets
- $549,045
- -12.5% vs 2024
- Primary geography
- Georgia (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Down Syndrome Diagnosis Network funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was National Down Syndrome Congress ($11K).
Grant Size Distribution
6 grants across all recorded years
The most common grant size was under $50K: 6 grants of 6 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2025 grant dollars on its one itemized grant.
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $750 (2022) to $14K (2024). In 2025 it made 1 grant totaling $11K.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| National Down Syndrome Congress Roswell, GA | Medical Outreach | $10,857 |
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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 | $549,045 | $583,386 | $633,088 | $10,857 | 1 | $9,944 |
| 2024 | $627,566 | $562,113 | $618,904 | $13,750 | 1 | $6,883 |
| 2023 | $701,264 | $636,269 | $575,865 | $10,000 | 1 | $7,110 |
| 2022 | $643,501 | $500,167 | $505,978 | $750 | Total only | $-1,620 |
| 2021 | $633,644 | $423,411 | $423,720 | $6,300 | 3 | $36 |
| 2020 | $633,954 | $409,033 | $255,579 | $8,300 | 6 | — |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About Down Syndrome Diagnosis Network
Based on IRS filings
Down Syndrome Diagnosis Network is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Stillwater, MN. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $549K in total assets. In 2025, it awarded 1 grant totaling $11K. Net investment income was $10K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Down Syndrome Diagnosis Network is led by Melissa Shutwell, Executive Director since 2023 (on filings since 2020); 1 of 12 officers listed in 2025 is compensated.
Officers on the 2025 filing
Melissa Shutwell
Executive Director
President → Executive Director, 2023
On filings since 2020
32 hrs/week
$80K (2024) → $80K (2025)
Kathleen Seitz
President
Director → President, 2023
On filings since 2022
1 hr/week
No compensation reported
Jenny Di Benedetto
Director
Vice President → Director, 2023
On filings since 2020
1 hr/week
No compensation reported
Ben Hughes
Director
On filings since 2021
1 hr/week
No compensation reported
Cassandra Drake
Director
On filings since 2022
1 hr/week
No compensation reported
Michael Pascual
Director
On filings since 2022
1 hr/week
No compensation reported
Jennifer Dingman
Director
On filings since 2023
1 hr/week
No compensation reported
Tony Nowicki
Director
On filings since 2023
1 hr/week
No compensation reported
Sarah Mesa-Haas
Director
On filings since 2024
1 hr/week
No compensation reported
Taryn Lagonigro
Secretary
Director → Secretary, 2022
On filings since 2021
1 hr/week
No compensation reported
Patricia Nesbitt
Vice President
Director → Vice President, 2023
On filings since 2022
1 hr/week
No compensation reported
Anna Yen Kim
Treasurer
Director → Treasurer, 2025
On filings since 2024
1 hr/week
No compensation reported
Former officers (30)
- Former: Julia Kaufman (2021–2024) — Treasurer
- Former: Jennifer Jacob (2020–2023) — Executive Director
- Former: Anthony Sisernos (2023) — Director
- Former: Heather Bradley (2020–2022) — Director
- Former: Kelli Caughman (2020–2022) — Director
- Former: Anthony Sisemos (2022) — Director
- Former: Deanna Darnes (2022) — Director
- Former: Becky Bausman (2020–2021) — Secretary
- Former: Jill Urich (2020–2021) — Treasurer
- Former: Yadira Regla-Cuevas (2020–2021) — Director
- Former: Andrew Hilgart (2020) — Director Dad Retreat
- Former: Cassie Besten (2020) — Co-Director Support
- Former: Cathleen Small (2020) — Secretary
- Former: Christy Cooper (2020) — Board Member
- Former: Crystal Tillman (2020) — Director Social Media
- Former: Hannah Pascucci (2020) — Director Medical
- Former: Jaime Erickson (2020) — Board Member
- Former: Jessica Pace (2020) — Fundraising Director
- Former: Jillian Benfield (2020) — Communication Director
- Former: Joe Scott (2020) — Board Member
- Former: Katie Williams (2020) — Co-Director Retreat
- Former: Kristin Moss (2020) — Co-Director of Local
- Former: Laura Gordon (2020) — Co-Director Support
- Former: Lauren Young (2020) — Co-Director of Local
- Former: Mandy Ramzan (2020) — Retreat Director
- Former: Michelle Steffen (2020) — Co-Director Retreat
- Former: Natalie Palin (2020) — Co-Director of Rff
- Former: Paula Ferrari (2020) — Co-Director of Rff
- Former: Sharon Kendrick (2020) — Director - Bfdsn
- Former: Stacey Graves (2020) — Director of Development
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 $80K, to Melissa Shutwell (Executive Director).
Frequently asked questions about Down Syndrome Diagnosis Network
How much does Down Syndrome Diagnosis Network give each year?
Down Syndrome Diagnosis Network gave $11K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $14K across 1 grant.
How large is Down Syndrome Diagnosis Network?
Down Syndrome Diagnosis Network reported $549K in total assets on its 2025 IRS Form 990. Its revenue that year was $583K.
What is Down Syndrome Diagnosis Network?
Down Syndrome Diagnosis Network is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Stillwater, MN. It holds $549K in total assets as of 2025.
Where does Down Syndrome Diagnosis Network operate?
Down Syndrome Diagnosis Network has awarded grants in Connecticut, Georgia, Kentucky, Michigan, North Carolina, New Jersey, Oklahoma, Oregon, Texas.
What is Down Syndrome Diagnosis Network's EIN?
Down Syndrome Diagnosis Network's EIN (Employer Identification Number) is 46-3042112. 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 July 24, 2023)
- Added Form 990 for fiscal year 2025 (received by the IRS May 6, 2026)
- IRS filings on file for fiscal years 2020–2024
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Down Syndrome Diagnosis Network down — hundreds of funders to go?