Nonprofit · EIN 26-4614274
EVERYLIFE FOUNDATION FOR RARE DISEASES
Tax-exempt · WASHINGTON, DC 20005
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $7,526,366 | $7,283,962 | $242,404 | $6,222,428 | $1,692,796 | $4,529,632 |
| December 31, 2024 | 990 | $7,031,574 | $6,841,685 | $189,889 | $6,217,588 | $2,009,473 | $4,208,115 |
| December 31, 2023 | 990 | $6,794,644 | $6,057,115 | $737,529 | $5,806,862 | $1,807,815 | $3,999,047 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $4,948,973
- Program service revenue
- $2,100,250
- Investment income
- $217,450
- Net rental income
- $112,265
- Net gain from sales of assets
- -$10,511
- Other revenue
- $259,693
Expenses
- Grants and similar amounts paid
- $550,640
- Compensation of officers, directors and key employees
- $318,360
- Other salaries and wages
- $2,776,019
- Salaries, compensation and benefits (total)
- $4,051,846
- Professional fundraising fees
- $0
- Legal fees
- $11,353
- Accounting fees
- $78,653
- Occupancy
- $262,908
- Travel
- $511,730
- Depreciation
- $4,009
- Program services (functional)
- $5,099,869
- Management and general (functional)
- $1,499,443
- Fundraising (functional)
- $684,650
Balance sheet and other
- Total assets, start of year
- $6,217,588
- Total assets, end of year
- $6,222,428
- Total liabilities, end of year
- $1,692,796
- Net assets, end of year
- $4,529,632
- Land, buildings and equipment
- $41,069
- Publicly traded securities
- $4,557,220
- Net assets without donor restrictions
- $3,401,887
- Net assets with donor restrictions
- $1,127,745
- Gross receipts
- $7,895,605
- Employees
- 32
- Volunteers
- 10
- Year formed
- 2009
- State of legal domicile
- MD
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Michael Pearlmutter | CEO Officer | 40 | $277,560 | $40,800 |
| Anne Kennedy | Policy & Advocacy | 40 | $275,317 | $25,558 |
| William Nolan | Chief Marketing | 40 | $194,750 | $31,000 |
| Jamie Sullivan | Sr. Dir of Policy | 40 | $158,465 | $15,029 |
| Edward Brasfield | Sr Dir of Develop | 40 | $140,347 | $20,787 |
| Shannon Von Felden | Sr Director of Adv | 40 | $138,640 | $18,770 |
| Vicky Seyfert-Margolis - 1225 | Chair Trustee or director, Officer | 2 | $0 | $0 |
| Frank Sasinowski | Vice Chair Trustee or director, Officer | 2 | $0 | $0 |
| Stephen Groft | Treasurer Trustee or director, Officer | 2 | $0 | $0 |
| Jennifer Bernstein | Secretary Trustee or director, Officer | 2 | $0 | $0 |
| Ritu Baral | Director Trustee or director | 2 | $0 | $0 |
| Shandra Trantham | Director Trustee or director | 2 | $0 | $0 |
| Lisa Carlton | Director Trustee or director | 2 | $0 | $0 |
| Merrill Friedman | Director Trustee or director | 2 | $0 | $0 |
| Amy Gaviglio - as of 1225 | Chair Trustee or director, Officer | 2 | $0 | $0 |
1 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Sarah-Lloyd Stevenson | Director Trustee or director | 2 | $0 |
990 for the year ended December 31, 2024: 17 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Anne Kennedy | Policy & Advocacy | 40 | $259,793 | $19,874 |
| Michael Pearlmutter | CEO Officer | 40 | $201,335 | $8,960 |
| Megan Pinegar | COO | 40 | $192,408 | $12,475 |
| Jamie Sullivan | Sr. Dir of Policy | 40 | $151,230 | $13,160 |
| Edward Brasfield | Sr Dir of Develop | 40 | $132,484 | $9,192 |
| Shannon Von Felden | Sr Director of Adv | 40 | $127,440 | $14,160 |
| Vicky Seyfert-Margolis | Chair Trustee or director, Officer | 2 | $0 | $0 |
| Frank Sasinowski | Vice Chair Trustee or director, Officer | 2 | $0 | $0 |
| Stephen Groft | Treasurer Trustee or director, Officer | 2 | $0 | $0 |
| Jennifer Bernstein | Secretary Trustee or director, Officer | 2 | $0 | $0 |
| Amrit Ray - until 224 | Director Trustee or director | 2 | $0 | $0 |
| Ritu Baral | Director Trustee or director | 2 | $0 | $0 |
| Shandra Trantham | Director Trustee or director | 2 | $0 | $0 |
| Abbey Hauser | Director Trustee or director | 2 | $0 | $0 |
| Lisa Carlton | Director Trustee or director | 2 | $0 | $0 |
| Cristina Casanova Might - until 122 | Director Trustee or director | 2 | $0 | $0 |
| Merrill Friedman | Director Trustee or director | 2 | $0 | $0 |
990 for the year ended December 31, 2023: 17 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Julia Jenkins | President & Executive Dir. Trustee or director, Officer | 40 | $273,948 | $22,227 |
| Anne Kennedy | Policy & Advocacy | 40 | $250,269 | $18,954 |
| Megan Pinegar | COO | 40 | $153,654 | $14,284 |
| Jamie Sullivan | Sr. Dir of Policy | 40 | $135,524 | $11,383 |
| Shannon Von Felden | Sr Director of Adv | 40 | $117,437 | $12,938 |
| Edward Brasfield | Sr Dir of Develop | 40 | $120,732 | $8,357 |
| Frank Sasinowski | Chair Trustee or director, Officer | 1 | $0 | $0 |
| Vicky Seyfert-Margolis | Vice Chair Trustee or director, Officer | 1 | $0 | $0 |
| Stephen Groft | Treasurer Trustee or director, Officer | 1 | $0 | $0 |
| Jennifer Bernstein | Secretary Trustee or director, Officer | 1 | $0 | $0 |
| Amrit Ray | Director Trustee or director | 1 | $0 | $0 |
| Ritu Baral - until 723 | Director Trustee or director | 1 | $0 | $0 |
| Emil Kakkis - until 423 | Director Trustee or director | 1 | $0 | $0 |
| Abbey Hauser | Director Trustee or director | 1 | $0 | $0 |
| Lisa Carlton | Director Trustee or director | 1 | $0 | $0 |
| Cristina Casanova Might | Director Trustee or director | 1 | $0 | $0 |
| Merrill Friedman | Director Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 1012 14TH ST NW STE 500, WASHINGTON, DC 20005-3406
- Principal officer (990 for 2025)
- Michael Pearlmutter, 1012 14TH STREET NW 500, WASHINGTON, DC 20005
- Signed the 990
- Michael Pearlmutter, CEO
- Phone
- (202) 697-7273
- Website
- WWW.EVERYLIFEFOUNDATION.ORG
- Return prepared by
- CEA Scholtes and Associates
Mission
INFORMATION REGARDING THE FOUNDATION'S PROGRAMS CAN BE OBTAINED AT WWW.EVERYLIFEFOUNDATION.ORG.
Program accomplishments
- THE POLICY PRIORITIES AND INITIATIVES OF THE EVERYLIFE FOUNDATION ARE IDENTIFIED BY THE EVERYLIFE FOUNDATION COMMUNITY CONGRESS, TO ENSURE THAT OUR POLICY PRIORITIES REFLECT THE MOST PRESSING NEEDS OF THE COMMUNITY. A MEMBERSHIP-BASED PROGRAM DEDICATED TO COLLABORATIVELY BRINGING PATIENT ORGANIZATIONS, INDUSTRY LEADERS, AND OTHER RARE DISEASE STAKEHOLDERS TOGETHER, THE COMMUNITY CONGRESS ACTS AS A STRATEGIC ADVISORY COUNCIL, PROVIDING ADVICE AND INSIGHT ON URGENT POLICY ISSUES IMPACTING THE RARE DISEASE COMMUNITY.Expenses $2,345,940 · revenue $2,100,250
- RARE DISEASE LEGISLATIVE ADVOCATES - RARE DISEASE LEGISLATIVE ADVOCATES RDLA IS A COLLABORATIVE PROGRAM DESIGNED TO SUPPORT THE ADVOCACY OF ALL RARE DISEASE GROUPS. RDLA WORKS TO EMPOWER THE INDIVIDUAL TO BECOME AN ADVOCATE BY PROVIDING INFORMATIONAL MEETINGS, LEGISLATIVE RESOURCES, ADVOCACY TOOLS, AND SPECIAL EVENTS THAT SUPPORT ORGANIZATIONS AND ADVOCATES WORKING TO PROMOTE RARE DISEASE LEGISLATION. RDLA'S GOAL IS TO BRING THE RARE DISEASE COMMUNITY TOGETHER, GROW THE PATIENT ADVOCACY COMMUNITY AND WORK COLLECTIVELY TO ENSURE THAT THE MANY VOICES OF PATIENTS WITH RARE DISEASES HAVE AN OPPORTUNITY TO BE HEARD IN STATE GOVERNMENT AND ON CAPITOL HILL.Expenses $1,835,953
- Patient programs and opportunities for patient engagement and community including an artist contest, collaborative workspace, and communications tools.Expenses $917,976 · grants $550,640 · revenue $147,428
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 26-4614274
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2009
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G012)
- Assets (IRS master file)
- $6,222,428
- Income (IRS master file)
- $7,895,605
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $7,526,366 | $7,283,962 | $6,222,428 | XML |
| 990 | December 2024 | $7,031,574 | $6,841,685 | $6,217,588 | XML |
| 990 | December 2023 | $6,794,644 | $6,057,115 | $5,806,862 | XML |
| 990 | December 2022 | $5,789,261 | $5,792,631 | $4,495,405 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 26-4614274).
Questions about EVERYLIFE FOUNDATION FOR RARE DISEASES
- What is the EIN of EVERYLIFE FOUNDATION FOR RARE DISEASES?
- The employer identification number (EIN) of EVERYLIFE FOUNDATION FOR RARE DISEASES is 26-4614274.
- Is EVERYLIFE FOUNDATION FOR RARE DISEASES tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2009.
- Are donations to EVERYLIFE FOUNDATION FOR RARE DISEASES tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does EVERYLIFE FOUNDATION FOR RARE DISEASES file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of EVERYLIFE FOUNDATION FOR RARE DISEASES due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did EVERYLIFE FOUNDATION FOR RARE DISEASES last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of EVERYLIFE FOUNDATION FOR RARE DISEASES?
- The 990 for the year ended December 31, 2025 names Michael Pearlmutter.
- Who are the officers and directors of EVERYLIFE FOUNDATION FOR RARE DISEASES?
- The 990 for the year ended December 31, 2025 lists 16 people; 6 received compensation from the organization, the highest $277,560 (Michael Pearlmutter, CEO).
- How much revenue does EVERYLIFE FOUNDATION FOR RARE DISEASES have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $7,526,366, expenses of $7,283,962 and total assets of $6,222,428 at year end.
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All nonprofits in WASHINGTON · District of Columbia · Voluntary health associations and medical disciplines