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Nonprofiteer
← CYSTIC FIBROSIS FOUNDATION

Form 990 for tax year 2022

Filed by CYSTIC FIBROSIS FOUNDATION.

Totals

Total revenue
$248,630,352
Total expenses
$396,664,114
Contributions and grants received
$97,948,958
Grants paid
$184,032,962
Program services expenses (Part IX)
$323,348,816
Management and general expenses
$42,879,557
Fundraising expenses
$30,435,741
Program service expenses (Part III)
$323,348,816

Program services were 81.5% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Listed in Part VII

  • MICHAEL P BOYLE MD

    PRESIDENT & CEO

    Total calculated
    $1,349,782
    From this org
    $950,256
    From related orgs
    $0
    Other
    $399,526
    Hours/week
    40 + 1 related

    Schedule J breakdown matched by us

    Base
    $647,211
    Bonus
    $297,943
    Other
    $5,102
    Deferred
    $350,116
    Nontaxable benefits
    $49,410
    Filer's total
    $1,349,782

  • LOUIS A DEFALCO

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    5

  • CAROLE B GRIEGO MD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • CATHERINE C MCLOUD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • CHAD T MOORE

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • DAVID A MOUNT

    TREASURER

    Total calculated
    $0
    Hours/week
    3

  • ROBERT H NIEHAUS

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    5

  • ERIC R OLSON PHD

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    5

  • DOMINIC J CARUSO

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • PAUL A MOTENKO

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • TERESA L ELDER

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    5

  • ERIC SCHNEIDER MD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • STEVEN SHAK MD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • JOHN S WEINBERG

    EXECUTIVE VICE CHAIR

    Total calculated
    $0
    Hours/week
    5

  • PAUL W WHETSELL

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • KC BRYAN WHITE

    CHAIR

    Total calculated
    $0
    Hours/week
    8

  • JESSICA H BOYD MD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    3

  • IRENA BARISIC

    EVP, CFAO, ASST. SEC. & ASST. TRSR.

    Total calculated
    $629,321
    From this org
    $557,940
    From related orgs
    $0
    Other
    $71,381
    Hours/week
    40 + 1 related

    Schedule J breakdown matched by us

    Base
    $513,800
    Bonus
    $43,000
    Other
    $1,140
    Deferred
    $69,210
    Nontaxable benefits
    $2,171
    Filer's total
    $629,321

  • MICHAEL B CAVADEL

    SVP, CHIEF LEGAL OFFICER, & SEC.

    Total calculated
    $222,440
    From this org
    $194,080
    From related orgs
    $0
    Other
    $28,360
    Hours/week
    40 + 1 related

    Schedule J breakdown matched by us

    Base
    $193,704
    Bonus
    $0
    Other
    $376
    Deferred
    $16,543
    Nontaxable benefits
    $11,817
    Filer's total
    $222,440

  • JACK MAHLER MD

    CHIEF INVESTMENT OFFICER

    Total calculated
    $2,694,782
    From this org
    $2,463,847
    From related orgs
    $0
    Other
    $230,935
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $695,940
    Bonus
    $1,760,233
    Other
    $7,674
    Deferred
    $193,597
    Nontaxable benefits
    $37,338
    Filer's total
    $2,694,782

  • BRUCE MARSHALL MD

    EVP & CHIEF MEDICAL OFFICER

    Total calculated
    $796,918
    From this org
    $692,205
    From related orgs
    $0
    Other
    $104,713
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $529,980
    Bonus
    $154,312
    Other
    $7,913
    Deferred
    $104,713
    Nontaxable benefits
    $0
    Filer's total
    $796,918

  • JOHN P CLANCY MD

    SVP, CLINICAL RESEARCH

    Total calculated
    $705,948
    From this org
    $551,336
    From related orgs
    $0
    Other
    $154,612
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $449,033
    Bonus
    $97,886
    Other
    $4,417
    Deferred
    $113,030
    Nontaxable benefits
    $41,582
    Filer's total
    $705,948

  • WILLIAM SKACH MD

    EVP & CHIEF SCIENTIFIC OFFICER

    Total calculated
    $517,253
    From this org
    $455,835
    From related orgs
    $0
    Other
    $61,418
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $279,431
    Bonus
    $172,324
    Other
    $4,080
    Deferred
    $30,720
    Nontaxable benefits
    $30,698
    Filer's total
    $517,253

  • EARL LEE

    MANAGING DIRECTOR, INVESTMENTS

    Total calculated
    $1,257,375
    From this org
    $1,023,013
    From related orgs
    $0
    Other
    $234,362
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $439,904
    Bonus
    $581,475
    Other
    $1,634
    Deferred
    $217,912
    Nontaxable benefits
    $16,450
    Filer's total
    $1,257,375

  • ERIC KOEHRSEN

    MANAGING DIRECTOR, INVESTMENTS

    Total calculated
    $1,169,271
    From this org
    $921,034
    From related orgs
    $0
    Other
    $248,237
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $407,807
    Bonus
    $512,092
    Other
    $1,135
    Deferred
    $199,727
    Nontaxable benefits
    $48,510
    Filer's total
    $1,169,271

  • MARY DWIGHT

    CHIEF POLICY & ADVOCACY OFFICER

    Total calculated
    $672,921
    From this org
    $543,012
    From related orgs
    $0
    Other
    $129,909
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $353,157
    Bonus
    $121,692
    Other
    $68,163
    Deferred
    $82,515
    Nontaxable benefits
    $47,394
    Filer's total
    $672,921

  • ANTHONY DURMOWICZ MD

    VP, CLINICAL DEVELOPMENT

    Total calculated
    $638,695
    From this org
    $574,023
    From related orgs
    $0
    Other
    $64,672
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $454,590
    Bonus
    $101,908
    Other
    $17,525
    Deferred
    $62,272
    Nontaxable benefits
    $2,400
    Filer's total
    $638,695

  • MARYBETH MCMAHON

    CHIEF OF STAFF

    Total calculated
    $645,343
    From this org
    $552,564
    From related orgs
    $0
    Other
    $92,779
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $318,947
    Bonus
    $138,066
    Other
    $95,551
    Deferred
    $75,625
    Nontaxable benefits
    $17,154
    Filer's total
    $645,343

  • PRESTON CAMPBELL MD

    FORMER CEO & STRATEGIC ADVISOR

    Total calculated
    $456,111
    From this org
    $393,943
    From related orgs
    $0
    Other
    $62,168
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $245,604
    Bonus
    $144,735
    Other
    $3,604
    Deferred
    $30,720
    Nontaxable benefits
    $31,448
    Filer's total
    $456,111

  • CHRIS GEGELYS

    FORMER CHIEF LEGAL OFFICER

    Total calculated
    $176,462
    From this org
    $176,462
    From related orgs
    $0
    Other
    $0
    Hours/week
    0

    Schedule J breakdown matched by us

    Base
    $7,918
    Bonus
    $148,798
    Other
    $19,746
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $176,462

  • MARC S GINSKY

    FORMER COO

    Total calculated
    $160,000
    From this org
    $160,000
    From related orgs
    $0
    Other
    $0
    Hours/week
    0

    Schedule J breakdown matched by us

    Base
    $0
    Bonus
    $0
    Other
    $160,000
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $160,000

  • VERA H TWIGG

    FORMER EVP, CFO

    Total calculated
    $103,286
    From this org
    $103,286
    From related orgs
    $0
    Other
    $0
    Hours/week
    0

    Schedule J breakdown matched by us

    Base
    $0
    Bonus
    $103,286
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $103,286

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 — 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 · Compensation committee
  • 3 · Independent compensation consultant
  • 3 · Form 990 of other organizations
  • 3 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee
  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 7 · Other non-fixed payments

Answered no

  • 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
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 4A:
AS PART OF A SEVERANCE AGREEMENT, THE EXECUTIVE RECEIVED THE BELOW INDICATED AMOUNT IN 2022. THE SEVERANCE AMOUNT WAS REVIEWED AND OPINED UPON AS REASONABLE BY AN INDEPENDENT COMPENSATION CONSULTANT AND APPROVED BY THE ORGANIZATION'S COMPENSATION COMMITTEE IN ACCORDANCE WITH THE IRS'S INTERMEDIATE SANCTIONS RULES. NAME: MARC S. GINSKY AMOUNT: $160,000
PART I, LINE 4B:
THE TWO EXECUTIVES LISTED BELOW PARTICIPATE IN A NONQUALIFIED DEFERRED COMPENSATION PLAN, UNDER WHICH INTERESTS ARE FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT PRIOR TO THE DESIGNATED VESTING DATE. INFORMATION REGARDING THE AMOUNT OF PAYMENTS MADE BY THE PLAN DURING THE REPORTING YEAR IS PROVIDED BELOW. NAME: JOHN C. MAHLER JR AMOUNT: $100,000 NAME: MICHAEL P. BOYLE, M.D. AMOUNT: $100,000
PART I, LINE 7:
SEVERAL INDIVIDUALS LISTED IN FORM 990, PART VII, SECTION A, LINE 1A, PARTICIPATED IN THE FOUNDATION'S INCENTIVE COMPENSATION PLAN, FROM WHICH NON-FIXED PAYMENTS NOT DESCRIBED IN LINES 5 AND 6 WERE PAID. THE INCENTIVE COMPENSATION PLAN PAYS NON-FIXED PAYMENTS SUBJECT TO, AND BASED ON, THE ACHIEVEMENTS OF ANNUAL PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD OF TRUSTEES. IN ADDITION, THE INCENTIVE COMPENSATION PLAN PAYS NON-FIXED PAYMENTS THAT RELATE TO A THREE-YEAR PERFORMANCE PERIOD, SUBJECT TO, AND BASED ON, THE ACHIEVEMENT OF LONG-TERM PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES SUCH AS ROYALTY STREAMS OR LUMP-SUM PAYMENTS, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS.

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

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

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

Provenance

Return type
form_990
Tax year
2022
Filed
8 November 2023
IRS schema version
2022v5.0
Source object
202333189349314028

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.