A Kids' Brain Tumor Cure Foundation (aka The Pediatric Low Grade Astrocytoma Foundation, Inc.)

Funding research, finding cures. Kids should fight for their dreams, not their lives.

aka A Kids' Brain Tumor Cure Foundation   |   Needham, MA   |  http://www.akidsbraintumorcure.org

Mission

The mission of A Kids' Brain Tumor Cure is:

1. To accelerate the pace of promising scientific research for the most common forms of pediatric brain cancer by acting as a catalyst for individuals and corporations to initiate fundraising projects that will benefit targeted research studies.

2. To identify a clear scientific research agenda for pediatric brain cancer and create opportunities for talented researchers and clinicians to apply for grant funding, as well, as follow through project monies.

3. To act as a central resource and a portal for information for parents, patients, families, clinicians, researchers, specialists, and other non-profit institutions seeking information about the most common forms of pediatric brain tumors.

Ruling year info

2007

President

Andrew "AJ" Janower

Main address

85 Riverbend Lane

Needham, MA 02492 USA

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EIN

26-0295572

NTEE code info

Cancer Research (H30)

Brain Disorders (H48)

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

Cancerous brain tumors have surpassed childhood leukemia as the #1 cause of cancer death in children. Historically, pediatric brain cancer research has been neglected. Current treatments are toxic and may cause permanent cognitive and physical impairments, leading to a severely diminished quality of life. Researchers are confident that more effective, less toxic treatments (targeted drug therapies) are on the horizon.

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?

Children's Brain Tumor Research

Currently, A Kids' Brain Tumor Cure Foundation operating programs include a comprehensive pediatric brain cancer website, parent/family outreach through hosting bi-annual webinars, targeted marketing campaigns, grass roots fundraising initiatives being conducted by parents/families from around the country, advocacy initiatives targeted at Congress and the National Cancer Institute, sponsoring scientific (basic science, translational and clinical trial projects) at a wide array of medical institutions around the country, and sponsoring international conferences for scientific and clinical expert collaboration.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of volunteers

This metric is no longer tracked.
Totals By Year

Percentage of board members who donate to the foundation

This metric is no longer tracked.
Totals By Year
Related Program

Children's Brain Tumor Research

Context Notes

All 7 of our Board Members are active donors to AKBTC

Number of followers/supporters on Facebook

This metric is no longer tracked.
Totals By Year
Context Notes

We maintain an active and informative Facebook page that we continue to grow organically.

Number of international conferences funded

This metric is no longer tracked.
Totals By Year
Related Program

Children's Brain Tumor Research

Average donation amount in $ per donor

This metric is no longer tracked.
Totals By Year
Related Program

Children's Brain Tumor Research

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.

The ultimate goal of A Kids' Brain Tumor Cure is to find more effective and less toxic treatments and a cure for children battling pediatric brain cancer, now the #1 cause of cancer death in children.

We seek to accomplish this goal through a dual-pronged strategy, which unites the most promising researchers with funding AND unites funding agencies to support these researchers.\

To date, A Kids' Brain Tumor Cure Foundation has raised over $14.5 million for research. We have been able to fund over three dozen of the most promising research projects targeted specifically at eradicating the most common forms of children's brain tumors. These funds have also helped launch the Dana-Farber Cancer Institute's PLGA Research Program, as well as projects at Children's Hospital of Philadelphia, Johns Hopkins Medical Center, Massachusetts General Hospital, University of Pittsburgh Children's Medical Center, Memorial Sloane Kettering Cancer Center and many others.

A Kids' Brain Tumor Cure Foundation actively promotes partnerships with other non-profit organizations, individuals, and government entities and has collaborated on fundraising, education and grant allocations in order to leverage resources and funds.

Since 2007, A Kids' Brain Tumor Cure has been actively engaged in raising awareness and funds for critically needed pediatric brain cancer research. Our unique approach enables our organization to provide seed funding to the most promising research studies. In turn, the projects that show efficacy for their concepts can then apply to the National Cancer Institute for their additional funding.

Our fundraising strategy is made possible through a variety of annual fundraising events across the country, personal fundraising campaigns by families affected by pediatric brain cancer and reaching out to like-minded non-profit organizations to partner in sponsoring particular grants.

In addition to raising funds, AKBTC impacts progress in this disease by sponsoring and participating in major industry conferences including International Society of Pediatric Neuro-Oncology (ISPNO) as well as helping found the Coalition Against Childhood Cancer (CAC2). These close alliances with other brain cancer and pediatric cancer organizations have enabled us to establish our organization as a preeminent leader in the pediatric brain cancer community, leveraging resources and relationships to accelerate the momentum and shine the spotlight on pediatric brain cancer.

Through our fundraising, advocacy, and scientific community outreach and collaboration, A Kids' Brain Tumor Cure has been able to provide critical seed funding to prove efficacy for promising research projects, a necessary precursor to NCI support of further research.

We have a robust scientific advisory board, including clinicians and researchers from Dana-Farber Cancer Institute and Memorial Sloan-Kettering Cancer Center who play an integral role in enabling us to advance our scientific research agenda. In addition, we have close associations with other national medical centers including Johns Hopkins, CHOP, Massachusetts General Hospital, St. Jude Children's Research Hospital and Children's National Medical Center. Our goal through this united effort is to find less toxic treatments and a cure for pediatric brain cancer, now the leading cause of cancer death in children.

Pediatric brain cancer has surpassed childhood leukemia as the #1 cause of cancer death in children. While there are only 3500 – 4000 new brain tumor diagnoses each year, losing even one child to this disease is too many. In addition, the children that survive rarely, if ever, 'walk away' unscathed. The impact of the current treatments often leaves these children severely impaired in both gross motor and/or neurological functioning. Loss of sight, loss of mobility, detrimental impact on intellectual abilities, severe weight gain or any of the other complications as a result of the diagnosis and the treatments that are used in order to eradicate the tumor are simply not good enough. These children deserve a chance to fight for their dreams, not their lives. Our organization is giving hope back to these children and scientists believe that there we are on the precipice of finding targeted medicines that will change the outcome for all of these children. We haven't yet accomplished the ultimate goal of curing these children. But we will if pediatric brain cancer is at the top of the research agenda for not just our organization, but the NCI's and big pharma as well. We will continue working toward that goal so that all children can live happy and healthy lives, free of pediatric brain cancer.

Financials

A Kids' Brain Tumor Cure Foundation (aka The Pediatric Low Grade Astrocytoma Foundation, Inc.)
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Operations

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

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A Kids' Brain Tumor Cure Foundation (aka The Pediatric Low Grade Astrocytoma Foundation, Inc.)

Board of directors
as of 06/28/2018
SOURCE: Self-reported by organization
Board chair

Andrew Janower

No Affiliation

Amy Glass

Kenneth Gainey

Daniel Itzkovitz

Michael Bass

Amy Weinstein

John Ragnoni

Andrew Janower

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes