Children's Brain Tumor Foundation, Inc.

Research*Community*Companionship

aka CBTF   |   New York, NY   |  http://www.cbtf.org

Mission

The Children's Brain Tumor Foundation (CBTF) was founded in 1988 by a group of dedicated parents, physicians, and friends to improve the treatment, quality of life, and the long term outlook for children with brain and spinal cord tumors through research support, education, and advocacy to families and survivors. In addition to providing funds to research a cure, the organization is the nation's leader in quality of life programs for families impacted by brain and spinal cord tumors. We support families from the day of diagnosis and throughout the brain tumor journey.

Ruling year info

1989

President

Ms. Stacia Wagner

Co Principal Officer

Beth Jones

Main address

1460 Broadway

New York, NY 10036 USA

Show more contact info

EIN

13-3512123

NTEE code info

Pediatrics Research (H98)

Cancer (G30)

Brain Disorders (G48)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

A child who has undergone any combination of surgery, chemotherapy and radiation may face lifelong challenges. Due to the length of time children are in treatment and away from other children of the same age, their development of social and other skills often lags behind that of their peers. Research shows that being socially connected improves the quality of life for individuals and is directly related to successful employment. Childhood cancer affects every member of the family - Moms, Dads and siblings too. Siblings of brain tumor patients also have struggles. There is an inherent the lack of attention paid to them, as the parents need to focus on the child with the brain tumor. This creates an internal conflict for the sibling. Parents also need to figure out their new normal. As for a cure, only 4 new drugs have been developed for all childhood cancers in the last 30 years, and none were specific for pediatric brain tumors.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors

Our free Resource Guide for Parents of Children with Brain and Spinal Cord Tumors is now in its seventh edition and available in English and Spanish. It is a practical and informational guide that explains the complexities of medical procedures, interruptions in school and social life, late effects, palliative care, and grief, and the emotional impact on the entire family.

Population(s) Served
Parents
Families
Health

CBTF provides the only national six-day conferences for young adult and teen brain and spinal cord tumor patients/survivors. The conference is held in partnership with Camp Mak-a-Dream. In addition to community building and recreation, topics such as career development, medical and cognitive late effects, and emotional and behavioral implications are discussed. The week's goal is to provide information, improve advocacy and social skills, and build a peer support community.

Population(s) Served
Adolescents
Chronically ill people
People with disabilities

The Just Us Retreat is the nation's only Father and Survivor Retreat. The program was created by fathers who Support discussed the impact their child's brain tumor diagnosis has on them and the difficulty having conversations about "normal" topics was. The weekend creates special moments for the fathers and their children and a support community for fathers.

Population(s) Served
Non-adult children
Parents

CBTF provides palliative care and bereavement support for families including a peer mentor program for bereaved parents and siblings. CBTF holds monthly bereavement online groups and offers in-person group meetings in several cities.

Population(s) Served
Parents

CBTF is a founding member, annual funder and Executive Committee member of the Children’s Brain Tumor Network. CBTN is a multi-institutional, worldwide, research program dedicated to the study and treatment of childhood brain tumors. With an operations center at Children's Hospital of Philadelphia, the CBTN includes 25 institutions, over 40 member institutions and has over 3600 patient subjects enrolled. It is the largest brain tumor biorepository on Earth. This work will lead to a cure and work towards minimizing late effects.

Population(s) Served
Non-adult children

Childhood brain tumor survivors are five times more unlikely to find employment than their pediatric cancer survivor peers. To improve the employment rate and independence of childhood brain tumor survivors, CBTF created a Career Program. In addition to monthly meetings, our Young Professionals Group works one on one with survivors. CBTF provides career and accommodation assessments.

Population(s) Served
Non-adult children

The best support comes from those who have traveled a similar journey. CBTF offers parent and survivor peer mentors. All mentors are vetted and trained. They connect with families around medical, educational and emotional challenges.

Population(s) Served

CBTF offers various programs each month to help survivors and siblings connect, find their talents, and express themselves. We hold monthly art programs led by survivors. Art kits are sent to the families participating. We also have poetry, photography, theatre, and cooking classes for children of all ages.

Population(s) Served
Families
Families

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Until this disease is eradicated, Children's Brain Tumor Foundation strives to improve the treatments for pediatric brain tumors. With over 120 types of brain and central nervous system tumors, there is no magic bullet.
In addition to finding cures and better treatments, CBTF's goal is to improve the quality of life for not only the brain tumor patient, but for each member of the family. Family members often report feelings of loneliness. CBTF wants to build and enhance a community of support so that nobody feels alone while traveling this path.
Once a child gets diagnosed with a brain or spinal cord tumor, CBTF wants families informed about everything that might be experienced along the journey.

CBTF is the founding funder of the Children's Brain Tumor Tissue Consortium (CBTTC). The CBTTC is a collaborative, multi-institutional, worldwide research program dedicated to the study and treatment of childhood brain tumors. It has developed a network of informatics and data applications which allow researchers from across the world to work together to discover cures.
Create programs to meet unmet family needs of childhood brain and spinal cord tumor families.
Create a Family Advisory Board for review of psychosocial research grants, identifying gaps in services, enhancing outreach and assisting with program evaluation.

In addition to having a Professor of Pediatrics, Hematology and Oncology, Professor of Neurology and Professor of Neuroscience as CBTF's scientific director, the organization also has on its Board a MD/PhD neurosurgeon who completed his fellowship in pediatric neurosurgery and pediatric neuro-oncology, a rare combination for a pediatric surgeon. These individuals guide the organization's research funding considerations.

CBTF's president and staff have been published in 10+ peer-reviewed medical journals, has provided work that appears in multiple medical textbooks and have presented in over 20 national conferences.

Along with the president, CBTF employs social workers in various regions throughout the country in order to provide services on a more localized level.

There have been several articles published stemming from work specifically tied to the Children's Brain Tumor Tissue Consortium. In order to keep the momentum moving in a positive direction, CBTF will continue to be a major funder of the Consortium infrastructure and the associated research coming from it.

Quality of life research has been published through data collected in the CBTF Career and Bereavement Programs.

Financials

Children's Brain Tumor Foundation, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Children's Brain Tumor Foundation, Inc.

Board of directors
as of 4/20/2021
SOURCE: Self-reported by organization
Board chair

Mr. Lionel Leventhal

Anita Nirenberg

Miriam Barry

Linda Wachtel

Robert Budlow

Eric Synder

Lionel Leventhal

Rob Lober Leigh Anne Brodsky

Christopher Coutts

Organizational demographics

SOURCE: Self-reported; last updated 04/20/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Heterosexual or Straight

The organization's co-leader identifies as:

Gender identity
Female
Sexual orientation
Heterosexual or Straight

Race & ethnicity

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data