Create and manage international collaborations and develop novel tools, enabling the faster development of safer medical products.

501(c)(3) charity; gifts are tax-deductible.
72¢ of each $1 spent went to programs.
$2.4M paid to officers and key staff.
Mission: Form 990 Part I, line 1 · Status: IRS Pub. 78 · Programs: Part IX · Pay: Part VII

Before you give

FY2021 · Form 990Independent: from IRS data, not the org
Download 990
IRS status
501(c)(3)
not on the IRS revocation list
Looks good: listed by the IRS and not on the revocation list.
IRS BMF · Auto-Revocation List
Tax-deductible gifts
Yes
Donations are tax-deductible
Looks good: the IRS lists gifts to it as deductible.
IRS Pub. 78 · IRS BMF
Latest return
FY2025
latest Form 990
Looks good: the latest return is for FY2025, 1 tax year back; within 2 tax years.
IRS e-file · Filing history
Surplus or deficit
6 of 6
filings with a surplus
Average surplus $3.0M a year · 9% of revenue · last 6 filings
Looks good: a surplus in 6 of the last 6 filings.
Pt I · Ln 19 · 6 filings
Spent on programs
72%
of spending
Fine: 72% of spending went to programs; 65% to 75%.
Pt IX · Ln 25 · col B
Pay to officers and key staff
$2.4M
to officers and key staff · 10% of spending
Looks good: pay to officers and key staff is 10% of spending; 15% or less.
Pt VII · Sec A
8 mo
of spending, in cash
Looks good: 8.4 months of spending in cash; 3 or more.
Pt X · Ln 1–2 · Pt I · Ln 18
Named funders
2
named funders · $600K
Fine: 2 funders name it on their filings; under 3.
Funders’ Sch. I, 990-PF
Liabilities
$8.0M
44% of total assets
Looks good: liabilities are 44% of assets; 50% or less.
Pt X · Ln 26
Independent board members
14
of 14 voting members
Looks good: 14 of 14 voting members are independent, a majority.
Pt VI · Ln 1a–1b
Looks goodFineWorth a lookConcernNo data yetTap a box for the reason.
Revenue
$24.4M
+32% vs prior year
Spent
$23.0M
To programs
72%
Net assets
$10.4M
By yearFY2020–FY2025
Revenue
$24.4M
FY2021▲ +32%
Tap a bar for its year
Revenue by fiscal year
FY2020$18.5M
FY2021$24.4M
FY2022$31.2M
FY2023$35.3M
FY2024$42.6M
FY2025$46.8M
Expenses
$23.0M
FY2021▲ +31%
Tap a bar for its year
Expenses by fiscal year
FY2020$17.6M
FY2021$23.0M
FY2022$29.6M
FY2023$32.0M
FY2024$38.3M
FY2025$40.2M
Net assets
$10.4M
FY2021▲ +16%
Tap a bar for its year
Net assets by fiscal year
FY2020$9.0M
FY2021$10.4M
FY2022$12.0M
FY2023$15.3M
FY2024$19.5M
FY2025$26.3M

From the FY2021 Form 990 (year ending June 2021) · figures checked against the IRS filing · see the original

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You’re viewing the FY2021 filing — not the latest on file. See the latest (FY2025) →

Is it real?

Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in May 2005.

IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File

Where the money goes

72 cents of each dollar spent went to programs.

Program services 72% · $16.7M Management & general 28% · $6.3M

Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.

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Who runs it and what they're paid

25 people listed on the 990; $2.4M paid to officers and key staff.

Part VII, Section A · reportable compensation · most recent filed roster (FY2020); the FY2021 filing did not itemize Part VII
President & CEO Through 03/19/2021
$361,951Pt VII · Sec A
Chief Operating Officer & Treasurer
$234,391Pt VII · Sec A
Chief Science Officer
$213,166Pt VII · Sec A
Program Officer
$204,323Pt VII · Sec A
Executive Director
$192,570Pt VII · Sec A
Program Officer
$192,261Pt VII · Sec A
Chief Technology Officer
$184,513Pt VII · Sec A
Executive Director
$179,844Pt VII · Sec A

Dr Klaus Romero’s $465K as CEO is at the 57th percentile of top reported officer pay among 127 $10–100M medical research nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.

Compensation history total reportable pay by year · 8 named individuals · Part VII

NameFY2025FY2024FY2023FY2022FY2021FY2020
Dr Klaus Romero$465,393$377,298$241,799$250,697$213,166$182,952
Mr Daniel M Jorgensen—$404,946$100,075———
Ms Kristen Swingle$382,404$357,490$310,147$307,667$234,391$126,647
Dr Joseph Scheeren———$84,936$361,951$242,633
Dr Cheryl Coon$322,075$236,768————
Mr Kevin Perkins$279,156$278,182$236,942$85,373——
Mr Collin Hovinga$273,459$244,685————
Mr Richard Liwski$267,416$256,981$226,150$225,262——

Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.

See Critical Path Institute executive salaries →

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Questions the 990 asks

The form asks each of these directly. These are the filed answers.

  • Family or business ties among officersPt VI · Ln 2Yes
  • Top official's pay set by an independent reviewPt VI · Ln 15aYes

Programs and updates

Develops tools and manages collaborations to speed up safer medical product creation.

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Provided by the organization

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3 programs · $7.3M · in their own filed words · FY2020
01

The rare disease cures accelerator-data and analytics platform (rdca-dap) - see schedule o

$5.4Mprogram expense
02

The rare disease clinical outcome assessment consortium (rd-coac) - see schedule o

$1.0Mprogram expense
03

The huntington's disease regulatory science consortium (HD-RSC) - see schedule o

$899Kprogram expense

Funders

Who pays for it.

From grant filings on record. Receipts are incomplete: individual donors are never listed.

Grants

Schedule I · received and paid
Grants received · FY2025
Total grants receivedfrom 2 funders$600K
Grants paid · 74 grants · $22.1M · 2019–2024
Northwestern UniversityIL · FY2024$381,946
Seattle Children's HospitalWA · FY2024$234,728
Yale UniversityCT · FY2024$172,778
University of PittsburghPA · FY2024$145,000
Washington UniversityMO · FY2024$140,000
Bioagilytix LabsFY2024$111,767
Hmh Hospitals CorpNJ · FY2024$109,798
University of ArizonaFY2024$102,500
Banner HealthAZ · FY2024$97,488
Pennsylvania State UniversityFY2024$92,500
IlluminaFY2024$77,336
University of TexasFY2024$60,000
Xcures INCFY2024$23,000
See all 74 grants →

By the numbers

The FY2021 990, line by line.

1The main four
Money inPt VIII
$24.4M
Ln 12
Gifts and grantsLn 1h$17.8M
Fees for servicesLn 2g$6.6M
Investment incomeLn 3$6K
Money outPt IX
$23.0M
Ln 25
Programscol B$16.7M
Managementcol C$6.3M
Owns and owesPt X
$10.4M
net assets · Ln 32
Cash and savingsLn 1–2$16.0M
Total assetsLn 16$18.5M
LiabilitiesLn 26$8.0M
PeoplePt VI, VII
25
listed · VII A
PaidVII A12
Voting boardVI 1a14
IndependentVI 1b14
2In more detail
Revenue in detailPt VIII
Gifts and grantsLn 1h$17.8M
Government grantsLn 1e$13.3M
Fees for servicesLn 2g$6.6M
Investment incomeLn 3$6K
Other incomeLn 4–11$942
Total revenueLn 12$24.4M
Assets in detailPt X, end of year
CashLn 1$2.6M
SavingsLn 2$13.5M
Cash and savings togetherLn 1–2$16.0M
InvestmentsLn 11–13$249K
Land, buildings, equipmentLn 10c$90K
Other assetsLn 15$142K
Total assetsLn 16$18.5M
LiabilitiesLn 26$8.0M
Net assetsLn 32$10.4M
OperationsPt I, VI
EmployeesI 599
VolunteersI 612
Fiscal year endsHeaderJune
Conflict-of-interest policyVI 12aYes
Whistleblower policyVI 13Yes
Records policyVI 14Yes
3Year over year
Balance sheet, start vs end of yearPt X · col A, B
LineStart FY21End FY21
Cash and savingsLn 1–2$10.6M$16.0M
InvestmentsLn 11–13$3.1M$249K
Land, buildings, equipmentLn 10c$84K$90K
Total assetsLn 16$16.7M$18.5M
LiabilitiesLn 26$7.6M$8.0M
Net assetsLn 32$9.0M$10.4M
4Every line
Statement of functional expensesPt IX · every line
LineTotalProgramsManagementFundraising
Grants to domestic organizationsLn 1$3.0M$3.0M
Grants and assistance to foreign recipientsLn 3$313K$313K
Pay of current officers, directors and key staffLn 5$1.7M$1.2M$488K
Other salaries and wagesLn 7$10.5M$7.4M$3.2M
Pension plan contributionsLn 8$691K$483K$208K
Other employee benefitsLn 9$879K$615K$264K
Payroll taxesLn 10$838K$587K$251K
Legal feesLn 11b$36K$2K$34K
Accounting feesLn 11c$57K$57K
Other fees for servicesLn 11g$2.1M$1.6M$473K
Advertising and promotionLn 12$308K$66K$243K
Office expensesLn 13$216K$20K$196K
Information technologyLn 14$1.3M$761K$515K
OccupancyLn 16$594K$424K$170K
Conferences, conventions and meetingsLn 19$205K$176K$29K
Depreciation, depletion and amortizationLn 22$36K$5K$31K
InsuranceLn 23$88K$88K
Other expenses (24a–d)Ln 24$165K$56K$109K
Total functional expensesLn 25$23.0M$16.7M$6.3M$0

Filing history

YearMoney inMoney outIn minus outNet assetsDownload
FY2025 Latest $46.8M$40.2M$6.6M$26.3M 990 PDF
FY2024 $42.6M$38.3M$4.3M$19.5M 990 PDF
FY2023 $35.3M$32.0M$3.3M$15.3M 990 PDF
FY2022 $31.2M$29.6M$1.6M$12.0M 990 PDF
FY2021 Viewing $24.4M$23.0M$1.4M$10.4M 990 PDF
FY2020 $18.5M$17.6M$912K$9.0M 990 PDF

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Schedules filed Part IV

III · Programs R · Related orgs G · Fundraising L · Interested persons I · Grants A · Public support F · Foreign J · Pay O · Explanations
See the full FY2021 990 (6 parts)
Part I · Summary $24,427,097 revenue, 12 lines filed
I-8 Contributions and grantsPrior year $12,978,641$17,810,315
I-9 Program service revenuePrior year $5,292,779$6,610,023
I-10 Investment incomePrior year $156,753$5,817
I-11 Other revenuePrior year $36,141$942
I-12 Total revenuePrior year $18,464,314$24,427,097
I-13 Grants and similar amounts paidPrior year $2,697,926$3,294,397
I-14 Benefits paid to membersPrior year $0$0
I-15 Salaries and benefitsPrior year $10,893,350$14,630,286
I-16a Professional fundraising feesPrior year $0$0
I-17 Other expensesPrior year $3,961,324$5,080,822
I-18 Total expensesPrior year $17,552,600$23,005,505
I-19 Revenue less expensesPrior year $911,714$1,421,592
Part VI · Governance 14 of 14 board members independent, 1 to look at
VI-1a Voting members of the governing body14
VI-1b Independent voting members14
VI-2 Family or business relationship among officers or directorsYes
VI-12a Written conflict of interest policyYes
VI-13 Written whistleblower policyYes
VI-14 Document retention and destruction policyYes
VI-15a Process for setting top official's payYes
Part VIII · Statement of revenue $24,427,097 across 7 lines filed
VIII-1e Government grants$13,307,065
VIII-1f All other contributions, gifts and grants$4,503,250
VIII-1h Total contributions, gifts and grants$17,810,315
VIII-2a-f Program service revenue, itemized rows (sum of 2a–2f as filed)Related to mission $6,610,023$6,610,023
VIII-3 Investment incomeExcluded from tax $5,817$5,817
VIII-11a-d Other revenue, itemized rows (sum of 11a–11d as filed)Related to mission $942$942
VIII-12 Total revenueRelated to mission $6,610,965 · Unrelated business $0 · Excluded from tax $5,817$24,427,097
Part IX · Statement of functional expenses $23,005,505 across 18 lines filed
IX-1 Grants to domestic organizationsPrograms $2,981,277$2,981,277
IX-3 Grants and assistance to foreign recipientsPrograms $313,120$313,120
IX-5 Pay of current officers, directors and key staffPrograms $1,203,897 · Management $488,017$1,691,914
IX-7 Other salaries and wagesPrograms $7,356,393 · Management $3,173,998$10,530,391
IX-8 Pension plan contributionsPrograms $483,087 · Management $208,185$691,272
IX-9 Other employee benefitsPrograms $614,706 · Management $264,410$879,116
IX-10 Payroll taxesPrograms $586,509 · Management $251,084$837,593
IX-11b Legal feesPrograms $2,045 · Management $34,100$36,145
IX-11c Accounting feesManagement $56,540$56,540
IX-11g Other fees for servicesPrograms $1,626,655 · Management $472,567$2,099,222
IX-12 Advertising and promotionPrograms $65,562 · Management $242,929$308,491
IX-13 Office expensesPrograms $19,756 · Management $196,117$215,873
IX-14 Information technologyPrograms $761,326 · Management $515,398$1,276,724
IX-16 OccupancyPrograms $423,574 · Management $169,999$593,573
IX-19 Conferences, conventions and meetingsPrograms $176,305 · Management $29,068$205,373
IX-22 Depreciation, depletion and amortizationPrograms $4,806 · Management $30,868$35,674
IX-23 InsuranceManagement $88,237$88,237
IX-24 Other expenses (24a–d)Programs $56,358 · Management $108,612$164,970
IX-25 Total functional expensesPrograms $16,675,376 · Management $6,330,129 · Fundraising $0$23,005,505
Part X · Balance sheet $18,494,765 assets, 16 lines filed
X-1 Cash, non-interest-bearingStart of year $8,304,830$2,563,917
X-2 Savings and temporary cash investmentsStart of year $2,281,093$13,473,971
X-3 Pledges and grants receivableStart of year $1,581,850$1,572,024
X-4 Accounts receivableStart of year $993,569$365,250
X-9 Prepaid expenses and deferred chargesStart of year $42,677$38,270
X-10c Land, buildings and equipment, netStart of year $83,834$90,400
X-11 Publicly traded securitiesStart of year $3,143,650$249,017
X-15 Other assetsStart of year $226,347$141,916
X-16 Total assetsStart of year $16,657,850$18,494,765
X-17 Accounts payable and accrued expensesStart of year $1,209,284$1,587,126
X-19 Deferred revenueStart of year $6,353,841$6,375,005
X-25 Other liabilitiesStart of year $67,613$83,930
X-26 Total liabilitiesStart of year $7,630,738$8,046,061
X-27 Net assets without donor restrictionsStart of year $9,027,112$10,448,704
X-32 Total net assets or fund balancesStart of year $9,027,112$10,448,704
X-33 Total liabilities and net assetsStart of year $16,657,850$18,494,765
Part XI · Reconciliation of net assets $10,448,704 net assets at year end
XI-1 Total revenue$24,427,097
XI-2 Total expenses$23,005,505
XI-3 Revenue less expenses$1,421,592
XI-4 Net assets at start of year$9,027,112
XI-9 Other changes in net assets$0
XI-10 Net assets at end of year$10,448,704

Form 990 e-file (XML) FY2021 from the IRS · Classification, formation year and address from the IRS Business Master File

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