Form 990 for tax year 2023
Filed by AMYOTROPHIC LATERAL SCLEROSIS ASSN.
Totals
- Total revenue
- $126,450,238
- Total expenses
- $98,839,577
- Contributions and grants received
- $124,090,097
- Grants paid
- $22,892,366
- Program services expenses (Part IX)
- $65,933,987
- Management and general expenses
- $9,514,527
- Fundraising expenses
- $23,391,063
- Program service expenses (Part III)
- $65,933,987
Program services were 66.7% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Listed in Part VII
-
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 (THRU 09/23)
- Total calculated
- $0
- Hours/week
- 5
-
SANDRA PIERSOL
SECRETARY
- Total calculated
- $0
- Hours/week
- 5
-
MARK STANCIL
TREASURER
- Total calculated
- $0
- Hours/week
- 5
-
CONNIE HOUSTON
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
JINSY ANDREWS
TRUSTEE (THRU 09/23)
- 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
-
CHRISTI L KOLARCIK PHD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
CHARLIE ROBINSON D SC PE
TRUSTEE (THRU 03/23)
- Total calculated
- $0
- Hours/week
- 2
-
J THOMAS MAY
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
JOHN P KRAVE JD
TRUSTEE (THRU 03/23)
- Total calculated
- $0
- Hours/week
- 2
-
JUDY PRATT DMD
TRUSTEE (THRU 03/23)
- Total calculated
- $0
- Hours/week
- 2
-
KENNETH MENKHAUS
TRUSTEE (THRU 09/23)
- Total calculated
- $0
- Hours/week
- 2
-
LARRY FALIVENA
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
LOU LIBBY MD
TRUSTEE (THRU 03/23)
- Total calculated
- $0
- Hours/week
- 2
-
MARK CALMES
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
MILLIE ARNOLD
TRUSTEE (THRU 09/23)
- Total calculated
- $0
- Hours/week
- 2
-
NANCY LEAMOND
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
PAUL INGHOLT
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
TOM CARROLL
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
WARREN NELSON
TRUSTEE (THRU 09/23)
- Total calculated
- $0
- Hours/week
- 2
-
WENDY J SCHRIBER
TRUSTEE (THRU 03/23)
- Total calculated
- $0
- Hours/week
- 2
-
MICHAEL BENATAR
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
-
KEVIN SPINELLA
TRUSTEE (THRU 03/23)
- Total calculated
- $0
- Hours/week
- 2
-
JOHN ROBINSON
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
DOUGH BUTCHER
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
WILLIAM SOFFELL
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
CHRIS TONNIGES
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
JESSE YBARRA
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
BERNIE ZIPPRICH
TRUSTEE
- Total calculated
- $0
- Hours/week
- 2
-
CALANEET BALAS
PRESIDENT AND CEO
- Total calculated
- $529,292
- From this org
- $480,990
- From related orgs
- $0
- Other
- $48,302
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $478,420
- Bonus
- $0
- Other
- $2,570
- Deferred
- $24,398
- Nontaxable benefits
- $23,904
- Filer's total
- $529,292
-
GREG MITCHELL
CHIEF FINANCIAL OFFICER
- Total calculated
- $312,721
- From this org
- $290,918
- From related orgs
- $0
- Other
- $21,803
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $288,170
- Bonus
- $0
- Other
- $2,748
- Deferred
- $20,095
- Nontaxable benefits
- $1,708
- Filer's total
- $312,721
-
TINA ZEFF
CHIEF OPERATIONS OFFICER
- Total calculated
- $419,528
- From this org
- $396,929
- From related orgs
- $0
- Other
- $22,599
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $110,282
- Bonus
- $0
- Other
- $286,647
- Deferred
- $8,145
- Nontaxable benefits
- $14,454
- Filer's total
- $419,528
-
NEIL THAKUR
CHIEF MISSION OFFICER
- Total calculated
- $298,832
- From this org
- $252,620
- From related orgs
- $0
- Other
- $46,212
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $250,002
- Bonus
- $0
- Other
- $2,618
- Deferred
- $18,141
- Nontaxable benefits
- $28,071
- Filer's total
- $298,832
-
DEAN FEENER
CHIEF INFORMATION & MARKETING OFFICER
- Total calculated
- $278,732
- From this org
- $261,683
- From related orgs
- $0
- Other
- $17,049
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $257,914
- Bonus
- $0
- Other
- $3,769
- Deferred
- $13,541
- Nontaxable benefits
- $3,508
- Filer's total
- $278,732
-
MONICA SANTA CRUZ
CHIEF PEOPLE OFFICER
- Total calculated
- $284,436
- From this org
- $263,468
- From related orgs
- $0
- Other
- $20,968
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $259,745
- Bonus
- $0
- Other
- $3,723
- Deferred
- $18,062
- Nontaxable benefits
- $2,906
- Filer's total
- $284,436
-
LANCE SLAUGHTER
SVP STRATEGIC ALLIANCES AN
- Total calculated
- $285,610
- From this org
- $245,541
- From related orgs
- $0
- Other
- $40,069
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $240,696
- Bonus
- $0
- Other
- $4,845
- Deferred
- $17,637
- Nontaxable benefits
- $22,432
- Filer's total
- $285,610
-
VICKIE LOBELLO
SENIOR VICE PRESIDENT ORG CHANGE
- Total calculated
- $259,819
- From this org
- $234,023
- From related orgs
- $0
- Other
- $25,796
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $229,489
- Bonus
- $0
- Other
- $4,534
- Deferred
- $13,470
- Nontaxable benefits
- $12,326
- Filer's total
- $259,819
-
BRIAN FREDERICK
SENIOR VICE PRESIDENT STRATEGIC COMMUNICATIONS
- Total calculated
- $250,575
- From this org
- $232,820
- From related orgs
- $0
- Other
- $17,755
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $230,820
- Bonus
- $0
- Other
- $2,000
- Deferred
- $16,246
- Nontaxable benefits
- $1,509
- Filer's total
- $250,575
-
KULDIP DAVE
SENIOR VICE PRESIDENT RESE
- Total calculated
- $290,825
- From this org
- $234,323
- From related orgs
- $0
- Other
- $56,502
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $232,247
- Bonus
- $0
- Other
- $2,076
- Deferred
- $17,007
- Nontaxable benefits
- $39,495
- Filer's total
- $290,825
-
KEITH GARY
VICE PRESIDENT MISSION ACCELERATION
- Total calculated
- $260,318
- From this org
- $221,069
- From related orgs
- $0
- Other
- $39,249
- Hours/week
- 37.5
Schedule J breakdown matched by us
- Base
- $216,586
- Bonus
- $0
- Other
- $4,483
- Deferred
- $16,157
- Nontaxable benefits
- $23,092
- Filer's total
- $260,318
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 — 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
- 4a · Severance or change-of-control payment
Answered no
- 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, LINE 4A
- TINA ZEFF, CHIEF OPERATIONS OFFICER, RECEIVED $285,000 IN SEVERANCE PAYMENT FOR HER SERVICES WITH THE ORGANIZATION.
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
-
$750,000
CLINICAL TRIAL AWARD
-
TRIAL CAPACITY PROGRAM; CLINICAL TRIAL AWARD
-
$500,000
CLINICAL TRIAL AWARD
-
$454,740
ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; BITNER PLANTE QUARTERLY GRANT; ADDITIONAL QUARTERLY GRANT FUNDING
-
$400,000
SEED GRANTS PROGRAM; TRIAL CAPACITY PROGRAM; QUALITY OF CARE PROGRAM
-
$390,413
CLINICAL TRIAL AWARD
-
$350,000
TRIAL CAPACITY PROGRAM; QUALITY OF CARE PROGRAM
-
SEED GRANTS PROGRAM; TRIAL CAPACITY PROGRAM; PREVENTION PROGRAM; INVESTIGATOR INITIATED AWARD MULTI YEAR
-
PREVENTION PROGRAM; TRIAL CAPACITY PROGRAM; INVESTIGATOR INITIATED AWARD MULTI YEAR; POST DOCTORAL FELLOWSHIP
-
$343,943
PREVENTION PROGRAM
The 10 largest by cash amount. The API serves every itemized grant.
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 13 December 2024
- IRS schema version
- 2023v5.1
- Source object
- 202413489349301366
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
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