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EVERYLIFE FOUNDATION FOR RARE DISEASES

EIN 26-4614274 WASHINGTON, DC

Revenue 2025
$7,526,366
Expenses 2025
$7,283,962

Program services were 70.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
G012
Classification
2100
Street
1012 14TH ST NW STE 500

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • Michael Pearlmutter

    CEO

    Total calculated
    $318,360
    From this org
    $277,560
    From related orgs
    $0
    Other
    $40,800
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $277,560
    Bonus
    not reported
    Other
    not reported
    Deferred
    $22,168
    Nontaxable benefits
    $18,632
    Filer's total
    $318,360

  • Anne Kennedy

    Policy & Advocacy

    Total calculated
    $300,875
    From this org
    $275,317
    From related orgs
    $0
    Other
    $25,558
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $275,317
    Bonus
    not reported
    Other
    not reported
    Deferred
    $21,061
    Nontaxable benefits
    $4,497
    Filer's total
    $300,875

  • William Nolan

    Chief Marketing

    Total calculated
    $225,750
    From this org
    $194,750
    From related orgs
    $0
    Other
    $31,000
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $194,750
    Bonus
    not reported
    Other
    not reported
    Deferred
    $31,000
    Nontaxable benefits
    not reported
    Filer's total
    $225,750

  • Jamie Sullivan

    Sr. Dir of Policy

    Total calculated
    $173,494
    From this org
    $158,465
    From related orgs
    $0
    Other
    $15,029
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $158,465
    Bonus
    not reported
    Other
    not reported
    Deferred
    $13,879
    Nontaxable benefits
    $1,150
    Filer's total
    $173,494

  • Edward Brasfield

    Sr Dir of Develop

    Total calculated
    $161,134
    From this org
    $140,347
    From related orgs
    $0
    Other
    $20,787
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $140,347
    Bonus
    not reported
    Other
    not reported
    Deferred
    $9,668
    Nontaxable benefits
    $11,119
    Filer's total
    $161,134

  • Shannon Von Felden

    Sr Director of Adv

    Total calculated
    $157,410
    From this org
    $138,640
    From related orgs
    $0
    Other
    $18,770
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $138,640
    Bonus
    not reported
    Other
    not reported
    Deferred
    $18,770
    Nontaxable benefits
    not reported
    Filer's total
    $157,410

  • Vicky Seyfert-Margolis - 1225

    Chair

    Total calculated
    $0
    Hours/week
    2

  • Frank Sasinowski

    Vice Chair

    Total calculated
    $0
    Hours/week
    2

  • Stephen Groft

    Treasurer

    Total calculated
    $0
    Hours/week
    2

  • Jennifer Bernstein

    Secretary

    Total calculated
    $0
    Hours/week
    2

  • Ritu Baral

    Director

    Total calculated
    $0
    Hours/week
    2

  • Shandra Trantham

    Director

    Total calculated
    $0
    Hours/week
    2

  • Lisa Carlton

    Director

    Total calculated
    $0
    Hours/week
    2

  • Merrill Friedman

    Director

    Total calculated
    $0
    Hours/week
    2

  • Amy Gaviglio - as of 1225

    Chair

    Total calculated
    $0
    Hours/week
    2

  • Sarah-Lloyd Stevenson

    Director

    Total calculated
    $0
    Hours/week
    2

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

  • 2025
    Revenue
    $7,526,366
    Expenses
    $7,283,962
    Contributions
    $4,948,973
    Grants paid
    $550,640
  • 2024
    Revenue
    $7,031,574
    Expenses
    $6,841,685
    Contributions
    $4,869,118
    Grants paid
    $622,000
  • 2023
    Revenue
    $6,794,644
    Expenses
    $6,057,115
    Contributions
    $6,643,478
    Grants paid
    $446,372
  • 2022
    Revenue
    $5,789,261
    Expenses
    $5,792,631
    Contributions
    $5,643,088
    Grants paid
    $421,405

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Grants made

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 10 September 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The IRS Business Master File ingested 5 October 2026, which is when the registration facts above were last refreshed for every organization. Returns through tax year 2025, the newest we have parsed for this organization.