Form 990 for tax year 2022
Filed by AMYOTROPHIC LATERAL SCLEROSIS ASSN.
Totals
- Total revenue
- $55,567,608
- Total expenses
- $84,199,819
- Contributions and grants received
- $53,676,289
- Grants paid
- $18,722,140
- Program service revenue
- $0
- Investment income
- $1,771,537
- Other revenue
- $119,782
- Total assets, end of year
- $94,445,022
- Total liabilities, end of year
- $30,210,557
- Net assets or fund balances, end of year
- $64,234,465
- Program services expenses (Part IX)
- $53,133,093
- Management and general expenses
- $9,007,120
- Fundraising expenses
- $22,059,606
- Program service expenses (Part III)
- $53,133,093
Program services were 63.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1a · Federated campaigns
$1,198,414
-
1c · Fundraising events
$7,846,854
-
1e · Government grants (contributions)
$1,976,304
-
1f · All other contributions, gifts and grants
$42,654,717
-
1g · Noncash contributions included above
$542,107
-
3 · Investment income
total $1,849,992 · excluded $1,849,992
-
5 · Royalties
total $83 · excluded $83
-
7a · Gross sales of assets other than inventory
securities $19,066,395
-
7b · Less cost or other basis and sales expenses
securities $19,144,850
-
7c · Gain or loss
securities -$78,455
-
7d · Net gain or loss
total -$78,455 · excluded -$78,455
-
8a · Fundraising events: gross income
$2,755,720
-
8a · Fundraising events: contributions included on line 1c
$7,846,854
-
8b · Fundraising events: direct expenses
$2,755,720
-
8c · Net income from fundraising events
total $0
-
11d · All other revenue
total $119,699 · excluded $119,699
-
11e · Other revenue, total
$119,699
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $14,641,389 · program services $14,641,389
-
2 · Grants to domestic individuals
total $2,012,096 · program services $2,012,096
-
3 · Grants to foreign organizations and individuals
total $2,068,655 · program services $2,068,655
-
5 · Compensation of officers, directors and key employees
total $2,009,534 · program services $655,782 · management and general $1,262,342 · fundraising $91,410
-
7 · Other salaries and wages
total $27,608,816 · program services $15,966,274 · management and general $2,013,950 · fundraising $9,628,592
-
8 · Pension plan contributions
total $1,706,558 · program services $945,498 · management and general $205,493 · fundraising $555,567
-
9 · Other employee benefits
total $2,683,237 · program services $1,535,337 · management and general $199,699 · fundraising $948,201
-
10 · Payroll taxes
total $2,202,494 · program services $1,251,771 · management and general $212,462 · fundraising $738,261
-
11b · Fees: legal
total $1,998,496 · program services $11,325 · management and general $1,987,171
-
11c · Fees: accounting
total $215,467 · program services $4,663 · management and general $88,147 · fundraising $122,657
-
11d · Fees: lobbying
total $172,117 · program services $172,117
-
11e · Fees: professional fundraising services
total $648,986 · fundraising $648,986
-
11f · Fees: investment management
total $180,821 · management and general $180,821
-
11g · Fees: other
total $4,511,839 · program services $2,470,962 · management and general $1,175,069 · fundraising $865,808
-
12 · Advertising and promotion
total $2,043,993 · program services $694,580 · management and general $28,220 · fundraising $1,321,193
-
13 · Office expenses
total $2,070,747 · program services $546,300 · management and general $71,601 · fundraising $1,452,846
-
14 · Information technology
total $5,455,057 · program services $2,207,417 · management and general $541,600 · fundraising $2,706,040
-
16 · Occupancy
total $1,541,161 · program services $817,587 · management and general $132,799 · fundraising $590,775
-
17 · Travel
total $2,549,205 · program services $1,256,172 · management and general $474,205 · fundraising $818,828
-
19 · Conferences, conventions and meetings
total $227,710 · program services $128,857 · management and general $41,311 · fundraising $57,542
-
20 · Interest
total $28,346 · management and general $28,346
-
22 · Depreciation, depletion and amortization
total $1,924,151 · program services $960,944 · management and general $184,623 · fundraising $778,584
-
23 · Insurance
total $185,917 · program services $85,629 · management and general $34,450 · fundraising $65,838
-
24a · Other expenses: CHAPTER SUPPORT
total $3,534,121 · program services $3,534,121
-
24b · Other expenses: TELECOMMUNICATIONS
total $483,048 · program services $245,266 · management and general $35,653 · fundraising $202,129
-
24c · Other expenses: PRINTING AND PUBLICATIO
total $421,025 · program services $225,737 · management and general $14,108 · fundraising $181,180
-
24d · Other expenses: DUES AND SUBSCRIPTIONS
total $295,805 · program services $101,526 · management and general $58,911 · fundraising $135,368
-
24e · All other expenses
total $779,028 · program services $593,088 · management and general $36,139 · fundraising $149,801
-
26 · Joint costs (an allocation of the lines above)
total $2,978,000 · program services $441,000 · management and general $0 · fundraising $2,537,000
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $5,640,945 · end of year $4,617,066
-
2 · Savings and temporary cash investments
beginning of year $924,888 · end of year $732,559
-
3 · Pledges and grants receivable
beginning of year $4,188,908 · end of year $13,399,732
-
4 · Accounts receivable
beginning of year $2,518,929 · end of year $2,928,243
-
9 · Prepaid expenses and deferred charges
beginning of year $1,639,445 · end of year $1,909,791
-
10a · Land, buildings and equipment: cost or other basis
$16,476,709
-
10b · Land, buildings and equipment: accumulated depreciation
$11,877,931
-
10c · Land, buildings and equipment, net
beginning of year $3,378,855 · end of year $4,598,778
-
11 · Investments: publicly traded securities
beginning of year $78,900,690 · end of year $58,740,613
-
15 · Other assets
beginning of year $1,150,423 · end of year $7,518,240
-
17 · Accounts payable and accrued expenses
beginning of year $3,519,829 · end of year $13,447,062
-
18 · Grants payable
beginning of year $1,150,000 · end of year $3,462,525
-
19 · Deferred revenue
beginning of year $0 · end of year $240,955
-
24 · Unsecured notes and loans payable
beginning of year $0 · end of year $3,396,470
-
25 · Other liabilities
beginning of year $2,583,421 · end of year $9,663,545
-
27 · Net assets without donor restrictions
beginning of year $79,396,160 · end of year $52,105,755
-
28 · Net assets with donor restrictions
beginning of year $11,693,673 · end of year $12,128,710
Mission and programs · 2022
Mission
SEE SCHEDULE O FOR THE ASSOCIATION'S MISSION. ALSO SEE SCHEDULE O FOR DISCUSSION ON HOW THE ASSOCIATION RESTRUCTURED INTO A SINGLE CORPORATION. THE ALS ASSOCIATION LEADS THE FIGHT TO TREAT AND CURE ALS THROUGH GLOBAL, CUTTING-EDGE RESEARCH AND TO EMPOWER PEOPLE WITH AMYOTROPHIC LATERAL SCLEROSIS AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT.
Activities or mission (Part I)
LEADING THE FIGHT TO CURE AND TREAT ALS THROUGH RESEARCH, ADVOCACY AND CARE SERVICES.
-
PATIENT AND COMMUNITY SERVICES: THE ASSOCIATION IS COMMITTED TO PROVIDING FULLY DEVELOPED, MANAGED AND EVALUATED PROGRAMS AND SERVICES TO PEOPLE LIVING WITH ALS, FAMILIES, CAREGIVERS AND PROFESSIONALS ACROSS THE UNITED STATES. PROGRAMS INCORPORATE THE PERSPECTIVES FROM KEY STAKEHOLDERS INCLUDING PEOPLE LIVING WITH THE DISEASE, SUBJECT MATTER EXPERTS, CLINICAL BEST PRACTICE, CAREGIVERS, TECHNOLOGY, ACADEMICIANS AND RESEARCH. ACTIVITIES ADDRESS CURRENT NEEDS AND EXPLORE FUTURE SERVICES, CREATING A FOUNDATION FOR INNOVATIVE AND ADVANCED PROGRAM DEVELOPMENT BASED ON SPECIFIC COMMUNITY NEEDS AND KNOWLEDGE ADVANCEMENTS. SPECIFIC ACTIVITIES INCLUDE 1) DEVELOPING AND IMPLEMENTING CLINICAL AND PROFESSIONAL EDUCATION PROGRAMS BASED ON ONGOING NEEDS ASSESSMENTS AND BEST PRACTICE; 2) IMPLEMENTING CERTIFIED CARE CENTER CERTIFICATION AND RECERTIFICATION PROGRAMS BASED ON NATIONALLY-RECOGNIZED STANDARDS OF PRACTICE, INCLUDING GRANTS TO SUPPORT CENTERS OF EXCELLENCE; 3) DEVELOPING STRATEGIES AND ACTUALIZING PLANS TO DELIVER CARE THROUGH OTHER THAN CERTIFIED CENTERS; 4) PROVIDING CURRENT INFORMATION, RESOURCES AND REFERRALS TO THE COMMUNITIES WE SERVE; AND 5) DEVELOPING AND IMPLEMENTING COMPREHENSIVE, CONSISTENT PROGRAMS AND SERVICES THAT ADDRESS INDIVIDUAL, FAMILY, AND CAREGIVER NEEDS BASED ON 'BEST PRACTICE AND AVAILABLE RESOURCES.
Expenses $26,960,747 · Grants $4,405,372
-
RESEARCH PROGRAMS - THE ASSOCIATION FUNDS SCIENTIFIC RESEARCH GRANTS TO DOCTORS/SCIENTISTS TO FIND THE CAUSE AND CURE OF AMYOTROPHIC LATERAL SCLEROSIS (ALS).
Expenses $15,622,467 · Grants $14,316,768
-
PUBLIC AND PROFESSIONAL EDUCATION: THE ASSOCIATION'S PUBLIC POLICY DEPARTMENT DEVELOPS AWARENESS AND UNDERSTANDING OF ALS AND THE WORK OF THE ASSOCIATION AMONG THE GENERAL PUBLIC, HEALTHCARE PROFESSIONALS, THE SCIENTIFIC COMMUNITY, AND ELECTED AND OTHER GOVERNMENT OFFICIALS. FOR THE YEAR ENDING JANUARY 31, 2023, THE ASSOCIATION WORKED WITH CONGRESS TO CONTINUE FUNDING FOR THE NATIONAL ALS REGISTRY AND THE ALS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE AS WELL AS FUNDING FOR ALS RESEARCH AT THE NATIONAL INSTITUTES OF HEALTH. IN ADDITION, THE ADVOCACY DEPARTMENT SECURED FUNDING FROM STATE GOVERNMENTS FOR CARE AND SUPPORT OF PEOPLE LIVING WITH ALS.
Expenses $10,549,879
As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
Calaneet BalasCALANEET BALAS
PRESIDENT AND CEO
- Total calculated
- $497,765
- From this org
- $456,666
- From related orgs
- $0
- Other
- $41,099
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $404,213
- Bonus
- $50,000
- Other
- $2,453
- Deferred
- $19,051
- Nontaxable benefits
- $22,048
- Filer's total
- $497,765
-
Tina ZeffTINA ZEFF
CHIEF OPERATIONS OFFICER
- Total calculated
- $349,584
- From this org
- $308,028
- From related orgs
- $0
- Other
- $41,556
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $268,389
- Bonus
- $37,500
- Other
- $2,139
- Deferred
- $14,818
- Nontaxable benefits
- $26,738
- Filer's total
- $349,584
-
Greg MitchellGREG MITCHELL
CHIEF FINANCIAL OFFICER
- Total calculated
- $321,784
- From this org
- $306,968
- From related orgs
- $0
- Other
- $14,816
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $272,824
- Bonus
- $32,000
- Other
- $2,144
- Deferred
- $14,816
- Nontaxable benefits
- $0
- Filer's total
- $321,784
-
Neil ThakurNEIL THAKUR
CHIEF MISSION OFFICER
- Total calculated
- $320,611
- From this org
- $275,627
- From related orgs
- $0
- Other
- $44,984
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $242,988
- Bonus
- $30,500
- Other
- $2,139
- Deferred
- $18,246
- Nontaxable benefits
- $26,738
- Filer's total
- $320,611
-
Dean FeenerDEAN FEENER
CHIEF INFORMATION AND MARKETING OFFICER
- Total calculated
- $259,816
- From this org
- $247,460
- From related orgs
- $0
- Other
- $12,356
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $245,451
- Bonus
- $0
- Other
- $2,009
- Deferred
- $12,356
- Nontaxable benefits
- $0
- Filer's total
- $259,816
-
Monica Santa CruzMONICA SANTA CRUZ
CHIEF PEOPLE OFFICER
- Total calculated
- $259,975
- From this org
- $247,360
- From related orgs
- $0
- Other
- $12,615
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $244,142
- Bonus
- $0
- Other
- $3,218
- Deferred
- $12,530
- Nontaxable benefits
- $85
- Filer's total
- $259,975
-
Lance SlaughterLANCE SLAUGHTER
SVP STRATEGIC ALLIANCES AND GOVERNANCE
- Total calculated
- $264,274
- From this org
- $241,396
- From related orgs
- $0
- Other
- $22,878
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $237,763
- Bonus
- $0
- Other
- $3,633
- Deferred
- $13,169
- Nontaxable benefits
- $9,709
- Filer's total
- $264,274
-
Vickie LobelloVICKIE LOBELLO
SENIOR VICE PRESIDENT ORGANIZATIONAL CHANGE
- Total calculated
- $247,467
- From this org
- $228,324
- From related orgs
- $0
- Other
- $19,143
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $223,885
- Bonus
- $0
- Other
- $4,439
- Deferred
- $8,774
- Nontaxable benefits
- $10,369
- Filer's total
- $247,467
-
Brian FrederickBRIAN FREDERICK
SENIOR VICE PRESIDENT STRATEGIC COMMUNICATIONS
- Total calculated
- $235,888
- From this org
- $224,926
- From related orgs
- $0
- Other
- $10,962
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $222,913
- Bonus
- $0
- Other
- $2,013
- Deferred
- $10,962
- Nontaxable benefits
- $0
- Filer's total
- $235,888
-
Kuldip DaveKULDIP DAVE
SENIOR VICE PRESIDENT RESEARCH
- Total calculated
- $272,314
- From this org
- $222,758
- From related orgs
- $0
- Other
- $49,556
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $220,727
- Bonus
- $0
- Other
- $2,031
- Deferred
- $13,643
- Nontaxable benefits
- $35,913
- Filer's total
- $272,314
-
Keith GaryKEITH GARY
VICE PRESIDENT MISSION ACCELERATION
- Total calculated
- $247,688
- From this org
- $214,098
- From related orgs
- $0
- Other
- $33,590
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $209,709
- Bonus
- $0
- Other
- $4,389
- Deferred
- $11,542
- Nontaxable benefits
- $22,048
- Filer's total
- $247,688
-
Scott KauffmanSCOTT KAUFFMAN
CHAIR
- Total calculated
- $0
- Hours/week
- 5
-
Fred M DegrandisFRED M DEGRANDIS
VICE-CHAIR
- Total calculated
- $0
- Hours/week
- 5
-
Sue GormanSUE GORMAN
IMMEDIATE PAST CHAIR
- Total calculated
- $0
- Hours/week
- 5
-
Connie HoustonCONNIE HOUSTON
TREASURER
- Total calculated
- $0
- Hours/week
- 4
-
Sandra PiersolSANDRA PIERSOL
SECRETARY
- Total calculated
- $0
- Hours/week
- 5
-
Jinsy AndrewsJINSY ANDREWS
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Eugene Brandon PhDEUGENE BRANDON PHD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
David Van De RietDAVID VAN DE RIET
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Clifton Gooch MDCLIFTON GOOCH MD
TRUSTEE (THRU 02/22)
- Total calculated
- $0
- Hours/week
- 2
-
Christi L Kolarcik PhDCHRISTI L KOLARCIK PHD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Charlie Robinson D Sc PECHARLIE ROBINSON D SC PE
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
J Thomas MayJ THOMAS MAY
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
John P Krave JDJOHN P KRAVE JD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
John RobinsonJOHN ROBINSON
TRUSTEE (THRU 02/22)
- Total calculated
- $0
- Hours/week
- 2
-
Judy Pratt DMDJUDY PRATT DMD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Kenneth MenkhausKENNETH MENKHAUS
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Kevin SpinellaKEVIN SPINELLA
TRUSTEE (THRU 12/22)
- Total calculated
- $0
- Hours/week
- 2
-
Larry FalivenaLARRY FALIVENA
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Lou Libby MDLOU LIBBY MD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Mark CalmesMARK CALMES
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Mark StancilMARK STANCIL
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Millie ArnoldMILLIE ARNOLD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Nancy LeamondNANCY LEAMOND
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Paul IngholtPAUL INGHOLT
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Tobin M KucharskiTOBIN M KUCHARSKI
TRUSTEE (THRU 02/22)
- Total calculated
- $0
- Hours/week
- 2
-
Tom CarrollTOM CARROLL
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Warren NelsonWARREN NELSON
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Wendy J SchriberWENDY J SCHRIBER
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Ken BaltesKEN BALTES
TRUSTEE (THRU 09/22)
- Total calculated
- $0
- Hours/week
- 2
-
Michael BenatarMICHAEL BENATAR
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Kathleen BoyceKATHLEEN BOYCE
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Amy BrachioAMY BRACHIO
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
John Rocky DallumJOHN ROCKY DALLUM
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Peter McKownPETER MCKOWN
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Rebecca MossREBECCA MOSS
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
Kenton Van HartenKENTON VAN HARTEN
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
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, and on a Form 990-PF Part VIII's — 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 · Compensation survey or study
- 3 · Approval by the board or compensation committee
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 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
- 7 · Other non-fixed payments
- 8 · Paid under the initial-contract exception
The filer's explanations (Part III)
- PART I, LINE 3
- THE EXECUTIVE COMPENSATION COMMITTEE PERFORMS THE ANNUAL REVIEW OF THE PRESIDENT AND CEO AND DETERMINES THE SALARY AND/OR BONUSES USING INFORMATION OBTAINED FROM OUTSIDE SOURCES FOR SIMILAR SIZED ORGANIZATIONS. THIS IS REVIEWED AND COMPARED WITH MARKET DATA FROM ORGANIZATIONS OF A SIMILAR SIZE AND IN THE SAME INDUSTRY. THIS PROCESS RECENTLY TOOK PLACE IN 2023.
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
-
UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL
$554,508
STRATEGIC INITIATIVE
-
$500,000
PARTNERSHIP PROGRAM GRANT
-
STRATEGIC INITIATIVE
-
$500,000
PARTNERSHIP PROGRAM GRANT
-
PARTNERSHIP PROGRAM GRANT
-
$450,000
STRATEGIC INITIATIVE
-
$300,000
TRIAL CAPACITY PROGRAM
-
UNIVERSITY OF SOUTHERN CALIFORNIA
$300,000
DRUG DEVELOPMENT CONTRACT
-
LIBRA THERAPEUTICS
$300,000
DRUG DEVELOPMENT CONTRACT
-
$256,057
PREVENTION PROGRAM
The 10 largest by cash amount. The API serves every itemized grant.
Provenance
- Return type
- form_990
- Tax year
- 2022
- Filed
- 13 December 2023
- IRS schema version
- 2022v5.0
- Source object
- 202303479349300530
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
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