National Down Syndrome Society
The National Down Syndrome Society empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions.
National Down Syndrome Society at a glance
In short: National Down Syndrome Society gave $100K across 1 grant in 2025 (avg $100K), mostly in Florida. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $100,000
- -55.4% vs 2024
- Grants made (2025)
- 1
- -66.7% vs 2024
- Average grant
- $100,000
- +33.8% vs 2024
- Median grant
- $100,000
- Total assets
- $12,363,529
- -4.8% vs 2024
- Primary geography
- Florida (100% 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 Society funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was AdventHealth Foundation ($100K).
Grant Size Distribution
4 grants across all recorded years
The most common grant size was in the $100–250K range: 3 grants of 4 (75%).
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2024 to 2025, annual grant giving ranged from $100K (2025) to $224K (2024). In 2025 it made 1 grant totaling $100K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| AdventHealth Foundation Altamonte Springs, FL | healthcare services | $100,000 |
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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 | $12,363,529 | $4,702,778 | $5,721,193 | $100,000 | 1 | $760,829 |
| 2024 | $12,985,609 | $4,012,682 | $5,273,290 | $224,200 | 3 | $757,855 |
| 2023 | $13,503,862 | $3,354,289 | $4,160,847 | — | — | $545,543 |
| 2022 | $13,076,710 | $3,651,955 | $3,391,372 | — | — | $336,258 |
| 2021 | $15,264,165 | $3,450,089 | $2,652,693 | — | — | $585,362 |
| 2020 | $12,397,203 | $3,126,980 | $2,764,858 | — | — | $310,127 |
About National Down Syndrome Society
Based on IRS filings
National Down Syndrome Society is a public charity, based in Washington, DC. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $12.4M in total assets. In 2025, it awarded 1 grant totaling $100K. Net investment income was $761K.
Leadership & Key People
Officers and directors from IRS filings
National Down Syndrome Society is led by Kandi Pickard, President & CEO since 2023 (on filings since 2020); 2 of 26 officers listed in 2025 are compensated.
Officers on the 2025 filing
Kandi Pickard
President & CEO
Executive Director → President & CEO, 2023
On filings since 2020
40 hrs/week
$130K (2020) → $197K (2025)
Carlo P Frappolli
Chairman
Treasurer → Vice President, 2022
Vice President → Chairman, 2024
On filings since 2020
2 hrs/week
No compensation reported
Debbie Morris
Director
On filings since 2020
0.7 hrs/week
No compensation reported
Elizabeth F Goodwin
Director
On filings since 2020
0.7 hrs/week
No compensation reported
John Cronin
Director
On filings since 2020
0.7 hrs/week
No compensation reported
Lisa Pelham
Director
On filings since 2020
0.7 hrs/week
No compensation reported
Mark Johnson
Director
On filings since 2020
0.7 hrs/week
No compensation reported
C Mitch Taylor
Director
On filings since 2021
0.7 hrs/week
No compensation reported
Thomas Santos
Director
On filings since 2021
0.7 hrs/week
No compensation reported
Misty Holmes
Director
On filings since 2022
0.7 hrs/week
No compensation reported
Candace Whiting
Director
On filings since 2023
1.5 hrs/week
No compensation reported
Lauren Wang
Director
On filings since 2023
0.7 hrs/week
No compensation reported
Michael Kulma
Director
On filings since 2023
0.7 hrs/week
No compensation reported
Ciara Siegel
Director
On filings since 2024
0.7 hrs/week
No compensation reported
Courtney Gaines
Director
On filings since 2024
0.7 hrs/week
No compensation reported
Joe Joyce
Director
On filings since 2024
0.7 hrs/week
No compensation reported
Kerry Sette
Director
On filings since 2024
0.7 hrs/week
No compensation reported
Marjorie Shavers
Director
On filings since 2024
0.7 hrs/week
No compensation reported
Robert Siegel
Director
On filings since 2024
0.7 hrs/week
No compensation reported
Schunda Murphy
Director
On filings since 2024
0.7 hrs/week
No compensation reported
Victoria Tremonti
Director
On filings since 2024
0.7 hrs/week
No compensation reported
John McGuire
Director
New on the 2025 filing
0.3 hrs/week
No compensation reported
Robert Snow
Disability Advisor
New on the 2025 filing
40 hrs/week
$97K (2025)
Janet Slaughter Eissenstat
Secretary
Director → Secretary, 2023
On filings since 2020
1.5 hrs/week
No compensation reported
John Short
Treasurer
Director → Treasurer, 2024
On filings since 2022
1.5 hrs/week
No compensation reported
Thomas Warner
Vice President
On filings since 2024
1.5 hrs/week
No compensation reported
Former officers (24)
- Former: Anthony Tony J Gostkowski (2020–2024) — Director
- Former: Sara Goldberg (2021–2024) — Vice President Strategic Development
- Former: Bob Siegel (2020–2023) — Director
- Former: Brandon Gruber (2020–2023) — Director
- Former: Heather Lavallee (2020–2023) — Director
- Former: Tiffany Barfield (2020–2023) — Chairman
- Former: Tom Warner (2022–2023) — Director
- Former: Annette Halprin (2020–2022) — Director
- Former: CAPT Robert P Taishoff USN ret (2020–2022) — Director
- Former: Charles Symington (2020–2022) — Director
- Former: Laurie Walters (2020–2022) — Director
- Former: Megan Perez Burke (2020–2022) — Director
- Former: Sean Duffy (2020–2022) — Director
- Former: Sean Fromm (2020–2022) — Director
- Former: Steve Freeman (2020–2022) — Director
- Former: Christopher Brooks (2022) — Director
- Former: Chris Brooks (2020–2021) — Director
- Former: Gordon Spoor CPA PFS CGMA (2020–2021) — Director
- Former: Amy C Allyn (2020) — Director
- Former: Brian Rodgers (2020) — Director
- Former: Cea Scholtes And Associates (2020) — CFO
- Former: Rick Kosmalski (2020) — Director
- Former: Roger Reeves PhD (2020) — Director
- Former: Sara Hart Weir (2020) — Executive 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 $197K, to Kandi Pickard (President & CEO). 2 officers or directors reported compensation on that filing.
Frequently asked questions about National Down Syndrome Society
How much does National Down Syndrome Society give each year?
National Down Syndrome Society gave $100K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $224K across 3 grants.
How large is National Down Syndrome Society?
National Down Syndrome Society reported $12.4M in total assets on its 2025 IRS Form 990. Its revenue that year was $4.7M.
Where does National Down Syndrome Society operate?
National Down Syndrome Society has awarded grants in Florida, Minnesota, Ohio.
What is National Down Syndrome Society's EIN?
National Down Syndrome Society's EIN (Employer Identification Number) is 13-2992567. 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
(2)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2024 (received by the IRS March 6, 2025)
- Updated Form 990 for fiscal year 2025 (received by the IRS March 16, 2026)
Explore Open Grants
Browse active grant opportunities in National Down Syndrome Society's focus areas in our free grants database
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