- Revenue 2024
- $19,738,640
- Expenses 2024
- $19,009,492
Program services were 83.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- NTEE code
- H50Z
- Classification
- 1200
- Street
- 697 3RD AVENUE 418
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.
-
CAROL KALAGHER
BOARD MEMBER (OUTGOING)
- Total calculated
- $0
- Hours/week
- 1
-
DANIEL ALTMAN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
DANIEL GILBERT
BOARD MEMBER (OUTGOING)
- Total calculated
- $0
- Hours/week
- 1
-
ED STERN
BOARD MEMBER (OUTGOING)
- Total calculated
- $0
- Hours/week
- 1
-
EMILY PARKER
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
FRANK HAUGHTON
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
GABRIEL GROISMAN
CHAIR
- Total calculated
- $0
- Hours/week
- 1
-
GEORGE THURONYI
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
JAISHRI BLAKELEY
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
KENNETH RUDD
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
LAURA GRANNEMAN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
LINDA H MARTIN
CHAIR EMERITUS
- Total calculated
- $0
- Hours/week
- 1
-
LIZ RODBELL
VICE CHAIR
- Total calculated
- $0
- Hours/week
- 1
-
LU LE
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MARK OPPENHEIMER
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
MONTSE MONTANER PICART
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
RANDALL STANICKY
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
RB HARRISON
TREASURER
- Total calculated
- $0
- Hours/week
- 1
-
RICHARD HORVITZ
CHAIR EMERITUS
- Total calculated
- $0
- Hours/week
- 1
-
RICHARD SOLL
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
ROBERT BRAININ
BOARD MEMBER (OUTGOING)
- Total calculated
- $0
- Hours/week
- 1
-
ROGER - KETCHA NGASSAM
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
SALLY GOTTESMAN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
SCOTT PLOTKIN
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
-
SIMONE MANSO
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 1
The first 25 listed. 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
- $19,738,640
- Expenses
- $19,009,492
- Contributions
- $18,893,523
- Grants paid
- $5,493,525
-
2023
- Revenue
- $16,447,289
- Expenses
- $18,828,152
- Contributions
- $15,690,910
- Grants paid
- $5,118,408
-
2022
- Revenue
- $16,990,325
- Expenses
- $15,815,548
- Contributions
- $15,521,908
- Grants paid
- $4,539,432
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
-
MASSACHUSETTS GENERAL HOSPITAL
$627,307
2023 RESEARCH - CONTRACT AWARD, YIA, CRA & NF CLINIC NETWORK
-
2022 RESEARCH - NFCN & CONTRACT AWARD
-
MASSACHUSETTS GENERAL HOSPITAL
$466,600
2022 RESEARCH - CONTRACT AWARD, YIA, CRA & NF CLINIC NETWORK
-
MASSACHUSETTS GENERAL HOSPITAL
$449,795
2024 RESEARCH - CONTRACT AWARD, YIA, DDI, CRA AND NF CLINIC NETWORK
-
2022 RESEARCH - NFCN & ADULT NF CLINIC PROGRAM
-
$439,440
2023 RESEARCH - CONTRACT AWARD & NF CLINIC NETWORK
-
$437,707
2024 RESEARCH - CONTRACT AWARD AND YIA
-
$388,847
2022 RESEARCH - CONTRACT AWARD, YIA & NF CLINIC NETWORK
-
2024 RESEARCH - CONTRACT AWARD, YIA AND NFCN
-
$328,754
2024 RESEARCH - CONTRACT AWARD
The 10 largest by cash amount. The API serves every itemized grant.
Grants received
-
$1,500,000
2024 SUPPORT FOR NEUROFIBROMATOSIS RESEARCH
-
$1,500,000
2022 SUPPORT FOR NEUROFIBROMATOSIS RESEARCH
-
$1,492,500
2023 SUPPORT FOR NEUROFIBROMATOSIS RESEARCH
-
$1,205,000
2024 IN FURTHERANCE OF GRANTEE'S TAX-EXEMPT PURPOSE
-
$823,000
2022 IN FURTHERANCE OF GRANTEE'S TAX-EXEMPT PURPOSE
-
$631,800
2023 IN FURTHERANCE OF GRANTEE'S TAX-EXEMPT PURPOSE
-
$550,000
2023 PROVIDE GENERAL OPERATING SUPPORT
-
2024 For grant recipient's exempt purposes
-
2023 For grant recipient's exempt purposes
-
DONOR ADVISED CHARITABLE GIVING
$257,449
2023 HEALTH
The 10 largest by cash amount. The API serves every itemized grant.
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.