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← EVERYLIFE FOUNDATION FOR RARE DISEASES

Form 990 for tax year 2022

Filed by EVERYLIFE FOUNDATION FOR RARE DISEASES.

Totals

Total revenue
$5,789,261
Total expenses
$5,792,631
Contributions and grants received
$5,643,088
Grants paid
$421,405
Program service revenue
$0
Investment income
$31,173
Other revenue
$115,000
Total assets, end of year
$4,495,405
Total liabilities, end of year
$1,254,443
Net assets or fund balances, end of year
$3,240,962
Program services expenses (Part IX)
$4,359,826
Management and general expenses
$1,081,173
Fundraising expenses
$351,632
Program service expenses (Part III)
$4,359,826

Program services were 75.3% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Listed in Part VII

  • Julia Jenkins

    President & Executive Dir.

    Total calculated
    $262,129
    From this org
    $243,797
    From related orgs
    $0
    Other
    $18,332
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $243,797
    Bonus
    not reported
    Other
    not reported
    Deferred
    $18,332
    Nontaxable benefits
    not reported
    Filer's total
    $262,129

  • Annie Kennedy

    Policy & Advocacy

    Total calculated
    $248,794
    From this org
    $233,456
    From related orgs
    $0
    Other
    $15,338
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $233,456
    Bonus
    not reported
    Other
    not reported
    Deferred
    $15,338
    Nontaxable benefits
    not reported
    Filer's total
    $248,794

  • Megan Pinegar

    COO

    Total calculated
    $154,338
    From this org
    $144,613
    From related orgs
    $0
    Other
    $9,725
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $144,613
    Bonus
    not reported
    Other
    not reported
    Deferred
    $9,725
    Nontaxable benefits
    not reported
    Filer's total
    $154,338

  • Jamie Sullivan

    Sr. Dir of Policy

    Total calculated
    $138,990
    From this org
    $130,486
    From related orgs
    $0
    Other
    $8,504
    Hours/week
    40

  • Mary Roth

    Communications

    Total calculated
    $134,300
    From this org
    $122,579
    From related orgs
    $0
    Other
    $11,721
    Hours/week
    40

  • Britta Dornan

    communications

    Total calculated
    $128,809
    From this org
    $112,779
    From related orgs
    $0
    Other
    $16,030
    Hours/week
    40

  • Mark Dant

    Chairman

    Total calculated
    $0
    Hours/week
    5

  • Frank Sasinowski

    Vice Chairman

    Total calculated
    $0
    Hours/week
    1

  • Vicky Seyfert-Margolis

    Treasurer

    Total calculated
    $0
    Hours/week
    1

  • Jennifer Bernstein

    Secretary

    Total calculated
    $0
    Hours/week
    1

  • Amrit Ray

    Director

    Total calculated
    $0
    Hours/week
    1

  • Ritu Baral

    Director

    Total calculated
    $0
    Hours/week
    1

  • Emil Kakkis

    Director

    Total calculated
    $0
    Hours/week
    1

  • Richard Finkel

    Director

    Total calculated
    $0
    Hours/week
    1

  • Stephen Groft

    Director

    Total calculated
    $0
    Hours/week
    1

  • Abbey Hauser

    Director

    Total calculated
    $0
    Hours/week
    1

  • Lisa Carlton

    Director

    Total calculated
    $0
    Hours/week
    1

  • Cristina Casanova Might

    Director

    Total calculated
    $0
    Hours/week
    1

  • Merrill Friedman

    Director

    Total calculated
    $0
    Hours/week
    1

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
2022
Filed
11 July 2023
IRS schema version
2022v5.0
Source object
202301929349300770

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