Answer Als: FY2020 Nonprofit Profile & Form 990 (EIN 47-1643994)

Creating the largest and most comprehensive foundation of als data ever amassed, encompansing clinical, chemical, genetic, protein, historical and biological data from an enormous sampling of als patients in the united states.

$1.5Mprogram 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 · FY2024

The Leandro P Rizzuto FoundationFY2024$868K

Charities Aid Foundation AmericaFY2024$250K

Alzheimers Disease Data Initiative INCFY2024$150K

Ochsner Clinic FoundationFY2024$30K

National Philanthropic TrustFY2024$25K

Fidelity Investments Charitable Gift FundFY2024$18K

Donor Advised Charitable Giving INCFY2024$10K

The Richard Stravitz FoundationFY2024$10K

Total grants receivedfrom 11 funders$1.4M

See all 11 funders →

Grants paid · 22 grants · $8.2M · 2020–2024

John Hopkins University School of MedicineFY2024$1,029,803

Cedars Sinai HospitalFY2024$523,889

Individual RecipientFY2024$487,346

Diagenode LLCFY2024$229,531

MicrosoftFY2024$174,099

Individual RecipientFY2024$60,678

Louisiana State University at Eunice FoundationLA · FY2024$41,973

Pennington Biomedical Research CenterFY2024$41,947

AlmaguFY2024$14,900

Foundation for the National Institutes of HealthFY2024$10,000

University of New Orleans Office of ResearchFY2024$6,995

Cedars Sinai HospitalFY2023$946,512

John Hopkins University School of MedicineFY2023$724,850

Diagenode LLCFY2023$227,400

Individual RecipientFY2023$53,689

Louisiana State University at Eunice FoundationLA · FY2023$41,425

AlmaguFY2023$15,000

John Hopkins University School of MedicineFY2022$500,000

See all 22 grants →

By the numbers

The FY2020 990, line by line.

Download 990

from philanthropy.org

1The main four

Money inPt VIII

$2.3M

Ln 12

Gifts and grantsLn 1h$2.3M

Money outPt IX

$1.7M

Ln 25

Programscol B$1.5M

Managementcol C$30K

Fundraisingcol D$264K

Owns and owesPt X

$8.3M

net assets · Ln 32

Cash and savingsLn 1–2$6.8M

Total assetsLn 16$8.3M

LiabilitiesLn 26$19K

PeoplePt VI, VII

9

listed · VII A

PaidVII A0

Voting boardVI 1a9

IndependentVI 1b7

2In more detail

Revenue in detailPt VIII

Gifts and grantsLn 1h$2.3M

Noncash giftsLn 1g$500K

Total revenueLn 12$2.3M

Assets in detailPt X, end of year

CashLn 1$6.8M

Cash and savings togetherLn 1–2$6.8M

Land, buildings, equipmentLn 10c$503K

Other assetsLn 15$3K

Total assetsLn 16$8.3M

LiabilitiesLn 26$19K

Net assetsLn 32$8.3M

OperationsPt I, VI

EmployeesI 51

VolunteersI 60

Fiscal year endsHeaderDecember

Conflict-of-interest policyVI 12aYes

Whistleblower policyVI 13No

Records policyVI 14Yes

3Year over year

Balance sheet, start vs end of yearPt X · col A, B

Line	Start FY20	End FY20
Cash and savingsLn 1–2	$7.1M	$6.8M
Land, buildings, equipmentLn 10c	$0	$503K
Total assetsLn 16	$8.2M	$8.3M
LiabilitiesLn 26	$435K	$19K
Net assetsLn 32	$7.8M	$8.3M

4Every line

Statement of functional expensesPt IX · every line

Line	Total	Programs	Management	Fundraising
Grants to domestic organizationsLn 1	$1.0M	$1.0M
Pay of current officers, directors and key staffLn 5	$60K	$60K
Payroll taxesLn 10	$5K	$5K
Accounting feesLn 11c	$10K		$10K
Other fees for servicesLn 11g	$39K	$39K
Advertising and promotionLn 12	$3K	$3K		$161
Office expensesLn 13	$4K		$4K
Information technologyLn 14	$7K	$5K	$334	$737
OccupancyLn 16	$2K		$2K
TravelLn 17	$3K	$1K		$2K
Conferences, conventions and meetingsLn 19	$3K		$3K
Depreciation, depletion and amortizationLn 22	$15K	$10K		$4K
InsuranceLn 23	$8K		$8K
Other expenses (24a–d)Ln 24	$582K	$325K		$257K
All other expensesLn 24e	$6K	$3K	$2K
Total functional expensesLn 25	$1.7M	$1.5M	$30K	$264K

Filing history

Year	Money in	Money out	In minus out	Net assets	Download
FY2024 Latest	$2.8M	$3.2M	−$428K	$6.9M	990 PDF
FY2023	$3.7M	$2.9M	$761K	$7.3M	990 PDF
FY2022	−$12K	$1.2M	−$1.2M	$6.3M	990 PDF
FY2021	$1.8M	$2.5M	−$668K	$7.6M	990 PDF
FY2020 Viewing	$2.3M	$1.7M	$529K	$8.3M	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 M · Noncash O · Explanations

See the full FY2020 990 (6 parts)

Part I · Summary $2,276,502 revenue, 12 lines filed

I-8 Contributions and grantsPrior year $1,559,568$2,276,502

I-9 Program service revenuePrior year $0$0

I-10 Investment incomePrior year $0$0

I-11 Other revenuePrior year −$198,979$0

I-12 Total revenuePrior year $1,360,589$2,276,502

I-13 Grants and similar amounts paidPrior year $2,077,600$1,000,000

I-14 Benefits paid to membersPrior year $0$0

I-15 Salaries and benefitsPrior year $35,516$64,784

I-16a Professional fundraising feesPrior year $0$0

I-17 Other expensesPrior year $223,523$682,595

I-18 Total expensesPrior year $2,336,639$1,747,379

I-19 Revenue less expensesPrior year −$976,050$529,123

Part VI · Governance 7 of 9 board members independent, 2 to look at

VI-1a Voting members of the governing body9

VI-1b Independent voting members7

VI-13 Written whistleblower policyNo

VI-15a Process for setting top official's payNo

VI-2 Family or business relationship among officers or directorsNo

VI-12a Written conflict of interest policyYes

VI-14 Document retention and destruction policyYes

Part VIII · Statement of revenue $2,276,502 across 4 lines filed

VIII-1f All other contributions, gifts and grants$2,276,502

VIII-1g Noncash contributions (included above)$500,000

VIII-1h Total contributions, gifts and grants$2,276,502

VIII-12 Total revenueRelated to mission $0 · Unrelated business $0 · Excluded from tax $0$2,276,502

Part IX · Statement of functional expenses $1,747,379 across 15 lines filed

IX-1 Grants to domestic organizationsPrograms $1,000,000$1,000,000

IX-5 Pay of current officers, directors and key staffPrograms $60,000$60,000

IX-10 Payroll taxesPrograms $4,784$4,784

IX-11c Accounting feesManagement $10,375$10,375

IX-11g Other fees for servicesPrograms $39,000$39,000

IX-12 Advertising and promotionPrograms $3,331 · Fundraising $161$3,492

IX-13 Office expensesManagement $4,358$4,358

IX-14 Information technologyPrograms $5,464 · Management $334 · Fundraising $737$6,535

IX-16 OccupancyManagement $1,992$1,992

IX-17 TravelPrograms $1,392 · Fundraising $1,756$3,148

IX-19 Conferences, conventions and meetingsManagement $2,983$2,983

IX-22 Depreciation, depletion and amortizationPrograms $10,336 · Fundraising $4,430$14,766

IX-23 InsuranceManagement $8,023$8,023

IX-24 Other expenses (24a–d)Programs $324,755 · Fundraising $257,324$582,079

IX-24e All other expensesPrograms $3,424 · Management $2,420$5,844

IX-25 Total functional expensesPrograms $1,452,486 · Management $30,485 · Fundraising $264,408$1,747,379

Part X · Balance sheet $8,316,048 assets, 14 lines filed

X-1 Cash, non-interest-bearingStart of year $7,125,474$6,766,091

X-3 Pledges and grants receivableStart of year $950,000$1,039,860

X-4 Accounts receivableStart of year $23,626$3,370

X-9 Prepaid expenses and deferred chargesStart of year $88,922$996

X-10c Land, buildings and equipment, netStart of year $0$503,225

X-15 Other assetsStart of year $0$2,506

X-16 Total assetsStart of year $8,202,383$8,316,048

X-17 Accounts payable and accrued expensesStart of year $74,957$19,499

X-25 Other liabilitiesStart of year $360,000$0

X-26 Total liabilitiesStart of year $434,957$19,499

X-27 Net assets without donor restrictionsStart of year $6,817,426$7,256,689

X-28 Net assets with donor restrictionsStart of year $950,000$1,039,860

X-32 Total net assets or fund balancesStart of year $7,767,426$8,296,549

X-33 Total liabilities and net assetsStart of year $8,202,383$8,316,048

Part XI · Reconciliation of net assets $8,296,549 net assets at year end

XI-1 Total revenue$2,276,502

XI-2 Total expenses$1,747,379

XI-3 Revenue less expenses$529,123

XI-4 Net assets at start of year$7,767,426

XI-9 Other changes in net assets$0

XI-10 Net assets at end of year$8,296,549

Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File

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Answer Als FY2020 filing

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Where the money goes

Who runs it and what they're paid

Questions the 990 asks

Programs and updates

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