Ehlers-Danlos Research Foundation Inc

Public charity · Grantmaker Pikesville, MD EIN: 84-4482546

Promote and increase research of the ehlers-danlos syndromes

Key facts about Ehlers-Danlos Research Foundation Inc

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.

EIN
84-4482546
Latest 990 filing
Form 990, 2025
Annual giving (2025)
$297,267
Grants made (2025)
1
Average grant
$297,267
Median grant
$297,267
Primary geography
New York (100% of itemized 2025 grant dollars)

Data from IRS Form 990, 2025; updated September 2026.

Financial Overview

From 2025 IRS Form 990 · View filing

Total Assets

—

Annual Giving

$297K

+199.4% YoY

Grant Count

1

+0.0% YoY

Avg Grant Size

$297K

+199.4% YoY

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

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

3states

Share of the 2025 grant dollars on its one itemized grant.

Cities

BaltimoreBlooingtonNew York

Giving Over Time

Total grant dollars and number of grants per year

$0$100K$200K$300K0 grants2020 0 grants2021 0 grants2022 2 grants2023 1 grant2024 1 grant2025

From 2023 to 2025, annual grant giving ranged from $99K (2024) to $297K (2025). In 2025 it made 1 grant totaling $297K.

Grant Insights

How this funder distributes its grants

Top Recipients

Top recipient in 2025

The Ehlers-Danlos Society Headquarters: $297KThe Ehlers-Danlos SocietyHeadquarters$297K

The largest 2025 recipient was The Ehlers-Danlos Society Headquarters ($297K).

Grant Size Distribution

4 grants across all recorded years

<$50K3$50–100K$100–250K1$250–500K$500K–1M$1–5M$5M+

The most common grant size was in the $50–100K range: 3 grants of 4 (75%).

Giving History

Grant recipients and amounts by year

RecipientPurposeAmount
The Ehlers-Danlos Society Headquarters New York, NYTo donate funds to an organization that closely matched the ehler's danlos research foundation's mission.$297,267

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
$0$100K$200K$300K$400K2020 2021 2022 2023 2024 2025
Metric202520242023
Total Assets—$293,252$411,519
Revenue$28,727$120,676$281,141
Expenses$321,979$238,943$335,642

Data update history

When this profile's IRS filing data changed on Grantable

  1. Updated Form 990 for fiscal year 2023 (received by the IRS March 7, 2025)
  2. Updated Form 990 for fiscal year 2024 (received by the IRS May 19, 2025)
  3. Added Form 990 for fiscal year 2025 (received by the IRS May 14, 2026)
  4. IRS filings on file for fiscal years 2020–2024

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.

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