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← EVERYLIFE FOUNDATION FOR RARE DISEASES

Form 990 for tax year 2025

Filed by EVERYLIFE FOUNDATION FOR RARE DISEASES.

Totals

Total revenue
$7,526,366
Total expenses
$7,283,962
Contributions and grants received
$4,948,973
Grants paid
$550,640
Program service revenue
$2,100,250
Investment income
$217,450
Other revenue
$259,693
Total assets, end of year
$6,222,428
Total liabilities, end of year
$1,692,796
Net assets or fund balances, end of year
$4,529,632
Program services expenses (Part IX)
$5,099,869
Management and general expenses
$1,499,443
Fundraising expenses
$684,650
Program service expenses (Part III)
$5,099,869

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

Listed in Part VII

  • 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.

Schedule J

Answered yes

  • 3 · Independent compensation consultant
  • 3 · Form 990 of other organizations
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

Provenance

Return type
form_990
Tax year
2025
IRS schema version
2025v4.1
Source object
202602229349300940

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