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CHILDREN'S TUMOR FOUNDATION
NEW YORK, NY · EIN 132298956 · Form 990 · FY2024 · NTEE H50Z · Medical Research · Large ($10M-$50M)
revenue
$19.7M
expenses
$19.0M
net assets
$26.8M
employees
55
volunteers
1,000
program ratio
84%
mission · from form 990

THE CHILDREN'S TUMOR FOUNDATION IS DEDICATED TO ENDING NEUROFIBROMATOSIS (NF). OUR MISSION IS TO: A.) FUND RESEARCH, B.) INCREASE PUBLIC AWARENESS, C.) SUPPORT PATIENTS AND FAMILIES, D.) ENCOURAGE ESTABLISHMENT OF NF CLINICS.

profile · synthesized from sources

Children's Tumor Foundation is a medical research nonprofit dedicated to ending neurofibromatosis (NF). The organization funds research, supports patients and families, increases public awareness, and promotes the establishment of NF clinics. It operates nationally, connecting researchers, clinicians, and families through education, advocacy, and support programs.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $4.86M
    PUBLIC EDUCATION AND PATIENT SUPPORT - THE CHILDREN'S TUMOR FOUNDATION ENGAGES IN PUBLIC EDUCATION THROUGH ITS WEBSITE, QUARTERLY NEWSLETTERS, MEDIA COVERAGE, AND ITS NATIONAL PROGRAMS. THROUGH OUR NF ENDURANCE AND NF WALK PROGRAMS, THE FOUNDATION HIGHLIGHTS NF HEROES AND THEIR TRIUMPHANT SPIRITS. THE FOUNDATION ALSO SPONSORS BENEFIT DINNERS AND REGIONAL AND LOCAL EVENTS TO PROMOTE AWARENESS. THE CHILDREN'S TUMOR FOUNDATION IS DEDICATED TO SUPPORTING PATIENTS WITH NF AS WELL AS THEIR FAMILY MEMBERS. THROUGH THE NF CLINIC NETWORK AND THE ANNUAL NF FORUM, THE FOUNDATION BRINGS RESEARCHERS, PROVIDERS, AND FAMILIES TOGETHER TO DISCUSS DEVELOPMENTS IN TREATMENTS. THE FOUNDATION ALSO SPONSORS THE ANNUAL NF CAMP WHICH BRINGS NF TEENS TOGETHER FOR ONE WEEK TO ENJOY THE SUPPORT AND FELLOWSHIP OF THEIR PEERS. REGIONAL SYMPOSIA ARE ALSO HELD THROUGHOUT THE YEAR.
named programs · 6 · from sources

What they call their work

Annual NF Forum
Brings together researchers, healthcare providers, and families to discuss advancements in NF treatments and research.
NF Camp
Annual summer camp program for teens with NF to foster peer support, fellowship, and recreational engagement.
NF Clinic Network
Supports and encourages the development of specialized clinics for neurofibromatosis care and connects patients with clinical providers.
NF Endurance
Fundraising program encouraging participation in endurance events to raise awareness and funds for NF research.
NF Walk
National fundraising and awareness event series that highlights individuals affected by NF and supports community engagement.
Regional Symposia
Local educational and support events held throughout the year for patients, families, and providers to share updates and resources.
activities · 3 groups

What they do

  • Patient and Researcher Conferences 2 activities
    • Regional symposia for the neurofibromatosis community
      Holds regional symposia throughout the year for the neurofibromatosis community to provide education and connection opportunities.
    • Support for patients and families through annual NF Forum
      Supports patients and families affected by neurofibromatosis by convening researchers, providers, and families at the annual NF Forum to discuss treatment developments.
  • Rare Genetic Disease Research and Advocacy 1 activity
    • Public education on neurofibromatosis
      Conducts public education about neurofibromatosis through its website, newsletters, media coverage, and national awareness programs including NF Endurance and NF Walk events.
  • Specialized Summer Camps for Disabilities 1 activity
    • Youth camp program for teens with neurofibromatosis
      Sponsors an annual camp for teens with neurofibromatosis to foster peer support and fellowship.
financials · form 990 · fy2024
revenue
Total revenue$19.74M
Contributions & grants$18.89M96%
Program service revenue$26K0%
Investment income$854K4%
Other revenue$-34K
expenses
Total expenses$19.01M
Program expenses84%
Admin / overhead8%
Fundraising8%
Salaries & benefits$6.79M
Grants paid out$5.49M
Largest expense lineCompensation
balance sheet
Total assets$30.68M
Cash$16.02M
Investments$8.68M
Liabilities$3.91M
Net assets$26.77M
Liquid reserves15.6 mo
3 years on record · 2020–2024 · YoY revenue +20.0%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 10
NameTitleHours/wkCompensation
ANNETTE BAKKER PRESIDENT 38 $468K
BRIGID GARELIK CHIEF MEDICAL OFFICER 38 $405K
SIMON VUKELJ CHIEF MARKETING OFFICER 38 $277K
MONICA SOHN CHIEF GROWTH OFFICER 38 $271K
IRENE MORGANSTERN DIRECTOR, PRECLINICAL INITIATIVES 38 $238K
BARBARA GALLAGHER VICE PRESIDENT OF DEV. 38 $215K
SARAH BOURNE SR. VP, FINANCE AND OPERATIONS 38 $203K
JENNIFER CHING DIRECTOR, HUMAN RESOURCES 38 $198K
AMY BOULAS VP DEV. PTP AND FIELD BASED EVENTS 38 $186K
MICHELE PRZYPYSZNY CHIEF ADVANCEMENT OFFICER 38 $171K
board members · 15
  • CAROL KALAGHER — BOARD MEMBER (OUTGOING)
  • DANIEL ALTMAN — BOARD MEMBER
  • DANIEL GILBERT — BOARD MEMBER (OUTGOING)
  • ED STERN — BOARD MEMBER (OUTGOING)
  • EMILY PARKER — BOARD MEMBER
  • FRANK HAUGHTON — BOARD MEMBER
  • GABRIEL GROISMAN — CHAIR
  • GEORGE THURONYI — BOARD MEMBER
  • JAISHRI BLAKELEY — BOARD MEMBER
  • KENNETH RUDD — BOARD MEMBER
  • LAURA GRANNEMAN — BOARD MEMBER
  • LINDA H MARTIN — CHAIR EMERITUS
  • LIZ RODBELL — VICE CHAIR
  • LU LE — BOARD MEMBER
  • MARK OPPENHEIMER — BOARD MEMBER
relationships · 1

Who they work with

  • NF Clinic Network Partner — Collaborates with the NF Clinic Network to connect patients with specialized care and integrate clinical and research communities.
strategies · 1

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Comprehensive Disease Eradication Strategy
    methodology: comprehensive_disease_eradication
    By integrating research funding, public awareness, patient support, and clinical development, the organization accelerates progress toward eradicating neurofibromatosis because sustained, multi-pathway engagement addresses both scientific and systemic barriers to cure.