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Nonprofiteer
← AMYOTROPHIC LATERAL SCLEROSIS ASSN

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 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 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 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 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 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 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 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 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 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 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 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 Kauffman

    CHAIR

    Total calculated
    $0
    Hours/week
    5
  • Fred M Degrandis

    VICE-CHAIR

    Total calculated
    $0
    Hours/week
    5
  • Sue Gorman

    IMMEDIATE PAST CHAIR

    Total calculated
    $0
    Hours/week
    5
  • Connie Houston

    TREASURER

    Total calculated
    $0
    Hours/week
    4
  • Sandra Piersol

    SECRETARY

    Total calculated
    $0
    Hours/week
    5
  • Jinsy Andrews

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Eugene Brandon PhD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • David Van De Riet

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Clifton Gooch MD

    TRUSTEE (THRU 02/22)

    Total calculated
    $0
    Hours/week
    2
  • Christi L Kolarcik PhD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Charlie Robinson D Sc PE

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • J Thomas May

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • John P Krave JD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • John Robinson

    TRUSTEE (THRU 02/22)

    Total calculated
    $0
    Hours/week
    2
  • Judy Pratt DMD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Kenneth Menkhaus

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Kevin Spinella

    TRUSTEE (THRU 12/22)

    Total calculated
    $0
    Hours/week
    2
  • Larry Falivena

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Lou Libby MD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Mark Calmes

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Mark Stancil

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Millie Arnold

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Nancy Leamond

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Paul Ingholt

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Tobin M Kucharski

    TRUSTEE (THRU 02/22)

    Total calculated
    $0
    Hours/week
    2
  • Tom Carroll

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Warren Nelson

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Wendy J Schriber

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Ken Baltes

    TRUSTEE (THRU 09/22)

    Total calculated
    $0
    Hours/week
    2
  • Michael Benatar

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Kathleen Boyce

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Amy Brachio

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • John Rocky Dallum

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Peter McKown

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Rebecca Moss

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2
  • Kenton 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

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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