- Revenue 2024
- $46,783,745
- Expenses 2024
- $40,232,360
Program services were 77.9% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- NTEE code
- H99
- Classification
- 1200
- Street
- 1840 E RIVER RD STE 100
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 · 2024
As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.
-
MS BONNIE ALLIN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MS MARA G ASPINALL
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MR PETER BARTON HUTT
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
DR KAREN BERNSTEIN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MR LOUIS BRETON
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
DR TIMOTHY R FRANSON
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MS KAY HOLCOMBE
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MR SHAUN A KIRKPATRICK
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MR ALAN G LEVIN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MR JAMES W NEWMAN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
DR TOMAS SALMONSON
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MR M WAINWRIGHT FISHBURN JR
CHAIRMAN
- Total calculated
- $0
- Hours/week
- 1
-
MR JEFFERY JACOB
VICE CHAIRMAN
- Total calculated
- $0
- Hours/week
- 1
-
DR KLAUS ROMERO
CEO
- Total calculated
- $519,080
- From this org
- $465,393
- From related orgs
- $0
- Other
- $53,687
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $431,193
- Bonus
- $34,200
- Other
- $0
- Deferred
- $34,736
- Nontaxable benefits
- $18,951
- Filer's total
- $519,080
-
MS KRISTEN SWINGLE
PRESIDENT & COO
- Total calculated
- $440,146
- From this org
- $382,404
- From related orgs
- $0
- Other
- $57,742
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $357,114
- Bonus
- $25,290
- Other
- $0
- Deferred
- $27,721
- Nontaxable benefits
- $30,021
- Filer's total
- $440,146
-
MR KEVIN PERKINS
CHIEF FINANCIAL OFFICER & TREASURER
- Total calculated
- $324,637
- From this org
- $279,156
- From related orgs
- $0
- Other
- $45,481
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $255,156
- Bonus
- $24,000
- Other
- $0
- Deferred
- $21,128
- Nontaxable benefits
- $24,353
- Filer's total
- $324,637
-
MR PAUL EDMEIER
CHIEF FINANCIAL OFFICER & TREASURER
- Total calculated
- $0
- Hours/week
- 40
-
MR LEWIS BARBIERI
CORPORATE SECRETARY
- Total calculated
- $177,093
- From this org
- $150,328
- From related orgs
- $0
- Other
- $26,765
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $146,198
- Bonus
- $4,130
- Other
- $0
- Deferred
- $11,891
- Nontaxable benefits
- $14,874
- Filer's total
- $177,093
-
MR RICHARD LIWSKI
CHIEF TECHNOLOGY OFFICER
- Total calculated
- $305,471
- From this org
- $267,416
- From related orgs
- $0
- Other
- $38,055
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $243,851
- Bonus
- $23,565
- Other
- $0
- Deferred
- $18,742
- Nontaxable benefits
- $19,313
- Filer's total
- $305,471
-
MR COLLIN HOVINGA
VP PROGRAMS
- Total calculated
- $295,796
- From this org
- $273,459
- From related orgs
- $0
- Other
- $22,337
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $253,459
- Bonus
- $20,000
- Other
- $0
- Deferred
- $20,046
- Nontaxable benefits
- $2,291
- Filer's total
- $295,796
-
DR CHERYL COON
VP PROGRAMS
- Total calculated
- $364,131
- From this org
- $322,075
- From related orgs
- $0
- Other
- $42,056
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $289,127
- Bonus
- $32,948
- Other
- $0
- Deferred
- $23,393
- Nontaxable benefits
- $18,663
- Filer's total
- $364,131
-
DR MARCO SCHITO
EXECUTIVE DIRECTOR
- Total calculated
- $293,944
- From this org
- $261,008
- From related orgs
- $0
- Other
- $32,936
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $256,179
- Bonus
- $4,829
- Other
- $0
- Deferred
- $15,740
- Nontaxable benefits
- $17,196
- Filer's total
- $293,944
-
DR SUDHIR SIVAKUMARAN
EXECUTIVE DIRECTOR
- Total calculated
- $259,494
- From this org
- $256,179
- From related orgs
- $0
- Other
- $3,315
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $256,179
- Bonus
- $0
- Other
- $0
- Deferred
- $2,198
- Nontaxable benefits
- $1,117
- Filer's total
- $259,494
-
DR MAAIKE EVERTS
EXECUTIVE DIRECTOR
- Total calculated
- $296,048
- From this org
- $257,993
- From related orgs
- $0
- Other
- $38,055
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $234,428
- Bonus
- $23,565
- Other
- $0
- Deferred
- $18,742
- Nontaxable benefits
- $19,313
- Filer's total
- $296,048
-
DR DIANE STEPHENSON
EXECUTIVE DIRECTOR
- Total calculated
- $297,470
- From this org
- $260,883
- From related orgs
- $0
- Other
- $36,587
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $238,656
- Bonus
- $22,227
- Other
- $0
- Deferred
- $17,444
- Nontaxable benefits
- $19,143
- Filer's total
- $297,470
The first 25 listed. 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. Earlier years are each on their own filing page.
Filings
-
2024
- Revenue
- $46,783,745
- Expenses
- $40,232,360
- Contributions
- $33,561,505
- Grants paid
- $5,186,032
-
2023
- Revenue
- $42,610,862
- Expenses
- $38,344,617
- Contributions
- $28,598,217
- Grants paid
- $5,059,784
-
2022
- Revenue
- $35,267,282
- Expenses
- $32,008,378
- Contributions
- $23,557,036
- Grants paid
- $4,623,204
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
-
2023 SUBAWARD
-
2022 SUBAWARD
-
SOCIETY OF CRITICAL CARE MEDICINE
$1,377,667
2022 SUBAWARD
-
NATIONAL ORGANIZATION FOR RARE DISORDERS
$1,319,385
2024 SUBAWARD
-
$525,000
2023 SUBAWARD
-
$501,197
2023 SUBAWARD
-
$480,752
2022 SUBAWARD
-
SOCIETY OF CRITICAL CARE MEDICINE
$480,000
2023 SUBAWARD
-
$381,946
2024 SUBAWARD
-
$347,500
2024 SUBAWARD
The 10 largest by cash amount. The API serves every itemized grant.
Grants received
-
2024 PARKINSON'S RESEARCH
-
2022 PARKINSON'S RESEARCH
-
2023 PARKINSON'S RESEARCH
-
SPASTIC PARAPLEGIA FOUNDATION INC
$500,000
2025 Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) Taskforce to create a consortium between leading academic institutions, pharmaceutical industries, patient groups, non-governmental agencies and regulatory agencies to address unmet drug development needs for patients living with HSP and PLS.
-
UNIVERSITY OF NOTRE DAME DU LAC
$500,000
2024 See Part IV
-
$345,997
2024 SUB-AWARD
-
2024 GIFT AND GRANT AGREEMENT, EX B. ARTICLES OF DISSOLUTION.
-
2024 RESEARCH - SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM
-
2022 RESEARCH - SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM
-
2025 RESEARCH- SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM
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.