Ehlers-Danlos Research Foundation Inc
Promote and increase research of the ehlers-danlos syndromes
Ehlers-Danlos Research Foundation Inc at a glance
In short: Ehlers-Danlos Research Foundation Inc gave $297K across 1 grant in 2025 (avg $297K), mostly in New York. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $297,267
- +199.4% vs 2024
- Grants made (2025)
- 1
- +0.0% vs 2024
- Average grant
- $297,267
- +199.4% vs 2024
- Median grant
- $297,267
- Primary geography
- New York (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Ehlers-Danlos Research Foundation Inc funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was The Ehlers-Danlos Society Headquarters ($297K).
Grant Size Distribution
4 grants across all recorded years
The most common grant size was in the $50–100K range: 3 grants of 4 (75%).
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2023 to 2025, annual grant giving ranged from $99K (2024) to $297K (2025). In 2025 it made 1 grant totaling $297K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| The Ehlers-Danlos Society Headquarters New York, NY | To donate funds to an organization that closely matched the ehler's danlos research foundation's mission. | $297,267 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants |
|---|---|---|---|---|---|
| 2025 | — | $28,727 | $321,979 | $297,267 | 1 |
| 2024 | $293,252 | $120,676 | $238,943 | $99,279 | 1 |
| 2023 | $411,519 | $281,141 | $335,642 | $152,208 | 2 |
| 2022 | $466,020 | $213,055 | $67,840 | — | — |
| 2021 | $320,805 | $301,721 | $77,590 | — | — |
| 2020 | $97,416 | $109,431 | $12,758 | — | — |
About Ehlers-Danlos Research Foundation Inc
Based on IRS filings
Ehlers-Danlos Research Foundation Inc is a public charity focused on Medical Research, based in Pikesville, MD. IRS filing data is available from 2020 through 2025. In 2025, it awarded 1 grant totaling $297K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Ehlers-Danlos Research Foundation Inc is led by Jennifer Spiegel Berman, President on every filing since 2020; none of the 7 officers listed in 2025 report compensation.
Officers on the 2025 filing
Jennifer Spiegel Berman
President
On filings since 2020
3 hrs/week
No compensation reported
Alissa Zingman
Medical Director
On filings since 2020
6 hrs/week
No compensation reported
Jessika Auerbach
Fundraising Director
On filings since 2020
3 hrs/week
No compensation reported
Ilene Ruhoy
Director
On filings since 2022
3 hrs/week
No compensation reported
Misia Van Arsdale
Director
On filings since 2022
3 hrs/week
No compensation reported
Jayne Gavrity
Treasurer
On filings since 2021
3 hrs/week
No compensation reported
Sharon Yoh
Donor Relations
On filings since 2022
3 hrs/week
No compensation reported
Former officers (1)
- Former: Michelle Van Arsdale (2020) — Treasurer
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.
Frequently asked questions about Ehlers-Danlos Research Foundation Inc
How much does Ehlers-Danlos Research Foundation Inc give each year?
Ehlers-Danlos Research Foundation Inc gave $297K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $99K across 1 grant.
What is Ehlers-Danlos Research Foundation Inc?
Ehlers-Danlos Research Foundation Inc is a public charity focused on Medical Research, based in Pikesville, MD.
Where does Ehlers-Danlos Research Foundation Inc operate?
Ehlers-Danlos Research Foundation Inc has awarded grants in Indiana, Maryland, New York.
What is Ehlers-Danlos Research Foundation Inc's EIN?
Ehlers-Danlos Research Foundation Inc's EIN (Employer Identification Number) is 84-4482546. 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
(4)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2023 (received by the IRS March 7, 2025)
- Updated Form 990 for fiscal year 2024 (received by the IRS May 19, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS May 14, 2026)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Ehlers-Danlos Research Foundation Inc funds
Medical Research Open opportunities, soonest deadline first.
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