Amyotrophic Lateral Sclerosis: FY2021 Nonprofit Profile & Form 990 (EIN 94-3124732)

Revenue by fiscal year
FY2021	$2.7M
FY2023	$4.0M
FY2023	$55K

Expenses by fiscal year
FY2021	$2.5M
FY2023	$4.3M
FY2023	$1.8M

Net assets by fiscal year
FY2021	$1.0M
FY2023	$1.8M
FY2023	$0

Is it real?

Yes. Never revoked by the IRS. Latest filing on record: FY2023.

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

Where the money goes

83 cents of each dollar spent went to programs.

83%

13%

Program services 83% · $2.0M Management & general 4% · $98K Fundraising 13% · $322K

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

13 people listed on the 990; $130K 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

Ray Carson

President/CEO

$130,000Pt VII · Sec A

Hampton Graham

Vice Chariman

$0Pt VII · Sec A

Glenn Stambaugh

Treasurer

$0Pt VII · Sec A

Sharon Sam Maybrook

Secretary

$0Pt VII · Sec A

Jo-Ann Clynch

Trustee

$0Pt VII · Sec A

Alecia Jones Bailey

Trustee

$0Pt VII · Sec A

John Cannistra

Chairman

$0Pt VII · Sec A

Kevin Conn

Trustee

$0Pt VII · Sec A

Compensation history total reportable pay by year · 1 named individual · Part VII

Name	FY2023	FY2021
Ray Carson	$163,308	$130,000

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.

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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

Improving lives with ALS through fundraising, programs, and advocacy.

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Provided by the organization

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3 programs · $1.9M · in their own filed words · FY2020

01

Patient Services

The als association florida chapter provided a wide range of services and programs to help people living with lou gehrig's disease. The chapter served 1,477 patients in 2020. Programs included: 1) partnership with 10 multidisciplinary als clinics in the state of florida, which include in-kind staff support, providing 1,548 clinic visits…

$1.5Mprogram expense

02

Awareness

Through public outreach, media relations, online platforms, chapter collateral, and social media, the als association florida chapter continued to raise awareness about als, the people we serve, our public policy goals, and the search for a treatment and cure.

$397Kprogram expense

03

Research

The als association florida chapter, through the als association, has committed over $2 million to research at several renowned research centers in the state including the mayo clinic in jacksonville, the university of south florida in tampa, the university of florida in gainesville and jacksonville, the university of miami, and holy…

$89Kprogram 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

Phillies Charities INCFY2024$10K

American Online Giving Foundation INCFY2024$9K

Total grants receivedfrom 2 funders$19K

Grants paid · 10 grants · $3.8M · 2020–2023

The Als AssociationMN · FY2023$1,829,845

The Als AssociationMN · FY2022$1,503,254

Unitemized GrantFY2022$119,938

Unitemized GrantFY2022$8,000

Unitemized GrantFY2022$1,050

The Als AssociationMN · FY2020$241,269

Unitemized GrantFY2020$55,070

The Als AssociationMN · FY2020$10,584

Unitemized GrantFY2020$5,000

Unitemized GrantFY2020$461

By the numbers

The FY2021 990, line by line.

Download 990

from philanthropy.org

1The main four

Money inPt VIII

$2.7M

Ln 12

Gifts and grantsLn 1h$2.7M

Investment incomeLn 3$2K

Money outPt IX

$2.5M

Ln 25

Programscol B$2.0M

Managementcol C$98K

Fundraisingcol D$322K

Owns and owesPt X

$1.0M

net assets · Ln 32

Cash and savingsLn 1–2$924K

Total assetsLn 16$1.9M

LiabilitiesLn 26$845K

PeoplePt VI, VII

13

listed · VII A

PaidVII A1

Voting boardVI 1a12

IndependentVI 1b12

2In more detail

Revenue in detailPt VIII

Gifts and grantsLn 1h$2.7M

Government grantsLn 1e$508K

Noncash giftsLn 1g$201K

Fundraising eventsLn 1c$810K

Investment incomeLn 3$2K

Gains on assetsLn 7$1K

Total revenueLn 12$2.7M

Assets in detailPt X, end of year

CashLn 1$344K

SavingsLn 2$579K

Cash and savings togetherLn 1–2$924K

InvestmentsLn 11–13$0

Land, buildings, equipmentLn 10c$526K

Other assetsLn 15$345

Total assetsLn 16$1.9M

LiabilitiesLn 26$845K

Net assetsLn 32$1.0M

OperationsPt I, VI

EmployeesI 520

VolunteersI 6325

Fiscal year endsHeaderJanuary

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

Line	Start FY21	End FY21
Cash and savingsLn 1–2	$503K	$924K
InvestmentsLn 11–13	$6K	$0
Land, buildings, equipmentLn 10c	$540K	$526K
Total assetsLn 16	$1.2M	$1.9M
LiabilitiesLn 26	$337K	$845K
Net assetsLn 32	$813K	$1.0M

4Every line

Statement of functional expensesPt IX · every line

Line	Total	Programs	Management	Fundraising
Grants to domestic organizationsLn 1	$252K	$252K
Grants to domestic individualsLn 2	$61K	$61K
Pay of current officers, directors and key staffLn 5	$134K	$107K	$13K	$13K
Other salaries and wagesLn 7	$917K	$668K	$13K	$235K
Pension plan contributionsLn 8	$15K	$11K	$72	$4K
Other employee benefitsLn 9	$74K	$54K	$2K	$17K
Payroll taxesLn 10	$80K	$59K	$2K	$19K
Legal feesLn 11b	$65	$65
Accounting feesLn 11c	$61K	$12K	$42K	$7K
Lobbying feesLn 11d	$37K	$37K
Other fees for servicesLn 11g	$534K	$528K	$540	$5K
Office expensesLn 13	$68K	$54K	$7K	$7K
Information technologyLn 14	$66K	$53K	$7K	$7K
OccupancyLn 16	$31K	$25K	$3K	$3K
TravelLn 17	$6K		$6K
Conferences, conventions and meetingsLn 19	$10K	$6K	$441	$3K
Depreciation, depletion and amortizationLn 22	$10K	$8K	$722	$1K
InsuranceLn 23	$3K	$2K	$263	$263
Other expenses (24a–d)Ln 24	$97K	$97K	$215
All other expensesLn 24e	$211	$169	$21	$21
Total functional expensesLn 25	$2.5M	$2.0M	$98K	$322K

Filing history

Year	Money in	Money out	In minus out	Net assets	Download
FY2023	$4.0M	$4.3M	−$357K	$1.8M	990 PDF
FY2022	Not on file
FY2021 Viewing	$2.7M	$2.5M	$206K	$1.0M	990 PDF

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Schedules filed Part IV

III · Programs R · Related orgs G · Fundraising L · Interested persons I · Grants M · Noncash O · Explanations

See the full FY2021 990 (6 parts)

Part I · Summary $2,660,252 revenue, 12 lines filed

I-8 Contributions and grantsPrior year $1,962,348$2,711,833

I-9 Program service revenuePrior year $0$0

I-10 Investment incomePrior year $1,419$2,447

I-11 Other revenuePrior year −$80,432−$54,028

I-12 Total revenuePrior year $1,883,335$2,660,252

I-13 Grants and similar amounts paidPrior year $310,864$312,384

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

I-15 Salaries and benefitsPrior year $1,141,838$1,219,290

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

I-17 Other expensesPrior year $668,431$922,772

I-18 Total expensesPrior year $2,121,133$2,454,446

I-19 Revenue less expensesPrior year −$237,798$205,806

Part VI · Governance 12 of 12 board members independent, 1 to look at

VI-1a Voting members of the governing body12

VI-1b Independent voting members12

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 $2,660,252 across 10 lines filed

Lines not itemized here account for $29 of total revenue; see the IRS return.

VIII-1c Fundraising events$809,996

VIII-1e Government grants$508,334

VIII-1f All other contributions, gifts and grants$1,393,503

VIII-1g Noncash contributions (included above)$201,495

VIII-1h Total contributions, gifts and grants$2,711,833

VIII-3 Investment incomeExcluded from tax $1,144$1,144

VIII-6 Net rental income or lossUnrelated business $741 · Excluded from tax $1,567$2,308

VIII-7 Net gain or loss on sales of assetsExcluded from tax $1,303$1,303

VIII-8 Net income from fundraising eventsExcluded from tax −$56,365−$56,365

VIII-12 Total revenueRelated to mission $0 · Unrelated business $741 · Excluded from tax −$52,322$2,660,252

Part IX · Statement of functional expenses $2,454,446 across 20 lines filed

IX-1 Grants to domestic organizationsPrograms $251,853$251,853

IX-2 Grants to domestic individualsPrograms $60,531$60,531

IX-5 Pay of current officers, directors and key staffPrograms $107,120 · Management $13,390 · Fundraising $13,390$133,900

IX-7 Other salaries and wagesPrograms $668,438 · Management $13,167 · Fundraising $235,059$916,664

IX-8 Pension plan contributionsPrograms $10,532 · Management $72 · Fundraising $3,994$14,598

IX-9 Other employee benefitsPrograms $54,433 · Management $1,844 · Fundraising $17,481$73,758

IX-10 Payroll taxesPrograms $59,313 · Management $2,009 · Fundraising $19,048$80,370

IX-11b Legal feesPrograms $65$65

IX-11c Accounting feesPrograms $11,633 · Management $42,142 · Fundraising $6,835$60,610

IX-11d Lobbying feesPrograms $37,270$37,270

IX-11g Other fees for servicesPrograms $528,383 · Management $540 · Fundraising $5,124$534,047

IX-13 Office expensesPrograms $54,180 · Management $7,468 · Fundraising $6,770$68,418

IX-14 Information technologyPrograms $52,554 · Management $6,569 · Fundraising $6,569$65,692

IX-16 OccupancyPrograms $24,818 · Management $3,102 · Fundraising $3,103$31,023

IX-17 TravelManagement $5,731$5,731

IX-19 Conferences, conventions and meetingsPrograms $6,460 · Management $441 · Fundraising $3,310$10,211

IX-22 Depreciation, depletion and amortizationPrograms $8,319 · Management $722 · Fundraising $1,005$10,046

IX-23 InsurancePrograms $2,107 · Management $263 · Fundraising $263$2,633

IX-24 Other expenses (24a–d)Programs $96,600 · Management $215$96,815

IX-24e All other expensesPrograms $169 · Management $21 · Fundraising $21$211

IX-25 Total functional expensesPrograms $2,034,778 · Management $97,696 · Fundraising $321,972$2,454,446

Part X · Balance sheet $1,859,209 assets, 17 lines filed

X-1 Cash, non-interest-bearingStart of year $81,007$344,353

X-2 Savings and temporary cash investmentsStart of year $422,258$579,198

X-3 Pledges and grants receivableStart of year $96,335$395,609

X-9 Prepaid expenses and deferred chargesStart of year $4,145$13,262

X-10c Land, buildings and equipment, netStart of year $540,303$526,442

X-11 Publicly traded securitiesStart of year $6,037$0

X-15 Other assetsStart of year $408$345

X-16 Total assetsStart of year $1,150,493$1,859,209

X-17 Accounts payable and accrued expensesStart of year $73,007$77,300

X-18 Grants payableStart of year $30,468$232,777

X-24 Unsecured notes and loans payable$190,600

X-25 Other liabilitiesStart of year $56,311$183,014

X-26 Total liabilitiesStart of year $337,277$845,187

X-27 Net assets without donor restrictionsStart of year $755,525$931,329

X-28 Net assets with donor restrictionsStart of year $57,691$82,693

X-32 Total net assets or fund balancesStart of year $813,216$1,014,022

X-33 Total liabilities and net assetsStart of year $1,150,493$1,859,209

Part XI · Reconciliation of net assets $1,014,022 net assets at year end

XI-1 Total revenue$2,660,252

XI-2 Total expenses$2,454,446

XI-3 Revenue less expenses$205,806

XI-4 Net assets at start of year$813,216

XI-9 Other changes in net assets−$5,000

XI-10 Net assets at end of year$1,014,022

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

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Amyotrophic Lateral Sclerosis FY2021 filing

Before you give

Is it real?

Where the money goes

Who runs it and what they're paid

Compensation history total reportable pay by year · 1 named individual · Part VII

Questions the 990 asks

Programs and updates

Questions for Amyotrophic Lateral Sclerosis

Patient Services

Awareness

Research

Funders

Grants

By the numbers

Filing history

Schedules filed Part IV