- Revenue 2024
- $2,817,907
- Expenses 2024
- $3,245,884
Program services were 96.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- NTEE code
- G50
- Classification
- 1280
- Street
- 930 ROBERT E LEE BLVD
These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).
Officers and directors · 2024
As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.
-
BEVERLY GOULET
BOARD CHAIR
- Total calculated
- $0
- Hours/week
- 1
-
CLARE DURRETT
MANAGING DIRECTOR
- Total calculated
- $0
- Hours/week
- 20
-
PAUL VARISCO
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 5
-
STEVE GLEASON
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
WILLIAM J QUINLAN JR
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
STEVE FINKBEINER
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
PAT QUINN
BOARD MEMBER EMERITUS
- Total calculated
- $0
- Hours/week
- 1
-
S MICHELLE FARR
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
ELIZABETH BRUCE
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
JOHN COSTELLO
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
COLLEEN STEPHENS
CHIEF OF STAFF
- Total calculated
- $0
- Hours/week
- 40
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. Earlier years are each on their own filing page.
Filings
-
2024
- Revenue
- $2,817,907
- Expenses
- $3,245,884
- Contributions
- $2,666,669
- Grants paid
- $2,621,161
-
2023
- Revenue
- $3,651,316
- Expenses
- $2,890,451
- Contributions
- $3,485,831
- Grants paid
- $2,036,876
-
2022
- Revenue
- -$12,049
- Expenses
- $1,225,402
- Contributions
- $957,217
- Grants paid
- $700,000
The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.
Grants made
-
JOHN HOPKINS UNIVERSITY SCHOOL OF MEDICINE
$1,029,803
2024 GRANT TO FUND ALS RESEARCH.
-
CEDARS SINAI HOSPITAL
$946,512
2023 GRANT TO FUND ALS RESEARCH.
-
JOHN HOPKINS UNIVERSITY SCHOOL OF MEDICINE
$724,850
2023 GRANT TO FUND ALS RESEARCH.
-
CEDARS SINAI HOSPITAL
$523,889
2024 GRANT TO FUND ALS RESEARCH.
-
JOHN HOPKINS UNIVERSITY SCHOOL OF MEDICINE
$500,000
2022 GRANT TO FUND ALS RESEARCH.
-
ON POINT SCIENTIFIC
$487,346
2024 GRANT TO FUND ALS RESEARCH.
-
DIAGENODE LLC
$229,531
2024 GRANT TO FUND ALS RESEARCH.
-
DIAGENODE LLC
$227,400
2023 GRANT TO FUND ALS RESEARCH.
-
MASSACHUSETTS INSTITUTE OF TECHNOLOGY- MCGOVERN INSTITUTE
$200,000
2022 DONATION TO ALS RESEARCH.
-
MICROSOFT
$174,099
2024 GRANT TO FUND ALS RESEARCH.
The 10 largest by cash amount. The API serves every itemized grant.
Grants received
-
CHARITIES AID FOUNDATION AMERICA
$292,500
2023 CHARITABLE DONATION
-
CHARITIES AID FOUNDATION AMERICA
$250,000
2024 CHARITABLE DONATION
-
DONOR ADVISED CHARITABLE GIVING
$175,700
2023 HEALTH
-
2023 To support the Answer ALS/ADDI Interoperability Project
-
DONOR ADVISED CHARITABLE GIVING
$64,050
2022 HEALTH
-
2023 GENERAL SUPPORT
-
$30,000
2022 GENERAL ASSISTANCE
-
$30,000
2024 GENERAL ASSISTANCE
-
$30,000
2023 SCIENCE
-
$25,000
2024 EDUCATION
The 10 largest by cash amount. The API serves every itemized grant.
Related organizations
From Schedule R Part II, where a filer lists the tax-exempt organizations it is related to by control. It does not record shared board members or money.
Declared on its 2024 return
-
501(C)(3) · SEE PART VII EXPLANATION · LA
Other IRS files
Auto-Revocation List
Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.
Publication 78
Listed as of 10 September 2026, under deductibility PC.
These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.