Everylife Foundation for Rare Diseases
Information regarding the foundation's programs can be obtained at www.everylifefoundation.org.
Everylife Foundation for Rare Diseases at a glance
In short: Everylife Foundation for Rare Diseases gave $538K across 1 grant in 2025 (avg $538K), mostly in Minnesota. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $537,500
- -12.6% vs 2024
- Grants made (2025)
- 1
- +0.0% vs 2024
- Average grant
- $537,500
- -12.6% vs 2024
- Median grant
- $537,500
- Total assets
- $6,222,428
- +0.1% vs 2024
- Primary geography
- Minnesota (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Everylife Foundation for Rare Diseases funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was Scholarship America ($538K).
Grant Size Distribution
5 grants across all recorded years
The most common grant size was in the $250–500K range: 3 grants of 5 (60%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2025 grant dollars on its one itemized grant.
States
Cities
How Everylife Foundation for Rare Diseases gives
- Giving grew 33% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $185K (2020) to $615K (2024). In 2025 it made 1 grant totaling $538K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Scholarship America Minneapolis, MN | scholarships | $537,500 |
Ready to take the next step with Everylife Foundation for Rare Diseases?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $6,222,428 | $7,526,366 | $7,283,962 | $537,500 | 1 | $217,450 |
| 2024 | $6,217,588 | $7,031,574 | $6,841,685 | $615,000 | 1 | $129,792 |
| 2023 | $5,806,862 | $6,794,644 | $6,057,115 | $433,175 | 1 | $51,937 |
| 2022 | $4,495,405 | $5,789,261 | $5,792,631 | $405,000 | 1 | $31,173 |
| 2021 | $4,550,600 | $5,479,237 | $5,088,034 | $295,000 | 1 | $1,327 |
| 2020 | $4,267,657 | $4,425,797 | $4,005,266 | $185,000 | 1 | $347 |
About Everylife Foundation for Rare Diseases
Based on IRS filings
Everylife Foundation for Rare Diseases is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Washington, DC. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $6.2M in total assets. In 2025, it awarded 1 grant totaling $538K. Net investment income was $217K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Everylife Foundation for Rare Diseases is led by Michael Pearlmutter, CEO on every filing since 2024; 6 of 15 officers listed in 2025 are compensated.
Officers on the 2025 filing
Michael Pearlmutter
CEO
On filings since 2024
40 hrs/week
$201K (2024) → $278K (2025)
Amy Gaviglio
Chair
New on the 2025 filing
2 hrs/week
No compensation reported
Vicky Seyfert-Margolis -
Chair
New on the 2025 filing
2 hrs/week
No compensation reported
Edward Brasfield
Senior Director of Development
Development → Senior Director of Development, 2023
On filings since 2020
40 hrs/week
$107K (2020) → $140K (2025)
Jamie Sullivan
Senior Director of Policy
On filings since 2021
40 hrs/week
$134K (2021) → $158K (2025)
Shannon Von Felden
Senior Director of Advisor
On filings since 2023
40 hrs/week
$117K (2023) → $139K (2025)
Lisa Carlton
Director
On filings since 2022
2 hrs/week
No compensation reported
Merrill Friedman
Director
On filings since 2022
2 hrs/week
No compensation reported
Shandra Trantham
Director
On filings since 2024
2 hrs/week
No compensation reported
Sarah-Lloyd Stevenson
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Anne Kennedy
Policy & Advocacy
On filings since 2020
40 hrs/week
$163K (2020) → $275K (2025)
William Nolan
Chief Marketing
New on the 2025 filing
40 hrs/week
$195K (2025)
Frank Sasinowski
Vice Chair
Vice Chairman → Chair, 2023
Chair → Vice Chair, 2024
On filings since 2020
2 hrs/week
No compensation reported
Jennifer Bernstein
Secretary
Director → Secretary, 2021
On filings since 2020
2 hrs/week
No compensation reported
Stephen Groft
Treasurer
Director → Treasurer, 2023
On filings since 2021
2 hrs/week
No compensation reported
Former officers (14)
- Former: Ritu Baral (2020–2025) — Director · Filing note: Until 723
- Former: Megan Pinegar (2020–2024) — COO
- Former: Vicky Seyfert-Margolis (2020–2024) — Chair
- Former: Abbey Hauser (2021–2024) — Director
- Former: Amrit Ray (2022–2024) — Director · Filing note: Until 224
- Former: Cristina Casanova Might (2022–2024) — Director · Filing note: Until 122
- Former: Emil Kakkis (2020–2023) — Director · Filing note: Until 423
- Former: Julia Jenkins (2020–2023) — President & Executive Director
- Former: Britta Dornan (2020–2022) — Communications
- Former: Mark Dant (2020–2022) — Chairman
- Former: Richard Finkel (2020–2022) — Director
- Former: Mary Roth (2022) — Communications
- Former: Ray Amrit (2020–2021) — Director
- Former: Carol Kennedy (2020) — 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 $278K, to Michael Pearlmutter (CEO). 6 officers or directors reported compensation on that filing.
Frequently asked questions about Everylife Foundation for Rare Diseases
How much does Everylife Foundation for Rare Diseases give each year?
Everylife Foundation for Rare Diseases gave $538K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $615K across 1 grant.
How large is Everylife Foundation for Rare Diseases?
Everylife Foundation for Rare Diseases reported $6.2M in total assets on its 2025 IRS Form 990. Its revenue that year was $7.5M.
What is Everylife Foundation for Rare Diseases?
Everylife Foundation for Rare Diseases is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Washington, DC. It holds $6.2M in total assets as of 2025.
Where does Everylife Foundation for Rare Diseases operate?
Everylife Foundation for Rare Diseases has awarded grants in Minnesota.
What is Everylife Foundation for Rare Diseases's EIN?
Everylife Foundation for Rare Diseases's EIN (Employer Identification Number) is 26-4614274. 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
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS August 6, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS August 18, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS July 11, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS August 2, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS July 23, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS August 10, 2026)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Everylife Foundation for Rare Diseases funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Everylife Foundation for Rare Diseases's focus areas in our free grants database
Similar Funders
Funders with grantees in common
Adam R Scripps Foundation
Ft Mitchell, KY
The Adam R Scripps Foundation funds science and STEM education, housing, health, scholarships, and community and cultural projects, with grants across multiple states, especially Texas and California. Its 2024 grants ranged from $1,000 to $2 million, with a median of $50,000. It funds only preselected organizations and does not accept unsolicited requests.
Assets
$754.6M
Grants
281
Total Given
$35.5M
Educational Credit Management Corporation
Minneapolis, MN
Educational Credit supports postsecondary access and student success, including FAFSA assistance, financial education, and student-support programs. Its 2024 grants had a median of $55,383, though amounts varied widely; funding was concentrated in Minnesota, with grants also reaching other states. The profile states that ECMC Foundation accepts unsolicited requests through a rolling online Letter of Inquiry process.
Assets
$209.1M
Grants
293
Total Given
$177.0M
S&P Global Foundation
New York, NY
The S&P Global Foundation supports resilient economies and communities, with grants for education, workforce readiness, economic development, and charitable, humanitarian, environmental, health, civic, and cultural programs. Its 2025 grants ranged from $15,800 to $9.4 million, with a median of $62,500; it focuses on communities where S&P Global employees live and work, including U.S. and international locations. It awards grants by invitation only and does not accept unsolicited requests.
Assets
$227.1M
Grants
10
Total Given
$12.7M
Pan-Oyler Foundation
Pittsburgh, PA
The Pan-Oyler Foundation supports charitable organizations in areas including education, hunger relief, health, food assistance, conservation, and veterans’ services. In 2025, grants ranged from $500 to $787,421, with a median of $6,500; most funding went to California, with smaller amounts reaching recipients in several other states and Washington, DC. It funds only preselected organizations and does not accept unsolicited requests.
Assets
$18.4M
Grants
14
Total Given
$890K
O'Brion Frank Trust Uw
Brooklyn, OH
Assets
$1.3M
Grants
5
Total Given
$43K
Battelle Memorial Institute
Columbus, OH
Battelle funds STEM and other education programs, as well as human services, arts and sciences, and economic development; its Central Ohio STEM grants support out-of-school K–12 programs, especially for underserved students. Its 2025 grants had a median of $12,300, with giving concentrated in Ohio, Virginia, New Mexico, Idaho, and Tennessee.
Assets
$1.9B
Grants
151
Total Given
$17.9M
More similar funders
More Funders in District of Columbia
The filing figures on this page are open data under CC BY 4.0. About GrantGraph Open
Figures come from Everylife Foundation for Rare Diseases's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
Everylife Foundation for Rare Diseases down — hundreds of funders to go?