A Kids` Brain Tumor Cure Foundation: driving forward research for

Reprinted with permission from the 2016/2017 world edition of Brain Tumour magazine. See www.theibta.org
A Kids’ Brain Tumor Cure Foundation:
driving forward research for the most
common forms of pediatric brain tumors
Amy J. Weinstein, Executive Director
A Kids’ Brain Tumor Cure, United States
BRAIN tumors are the number one cause of
cancer-related death in children and current
treatments are toxic, cause permanent
cognitive and physical impairments, and
severely diminish the quality of life for
children who are battling brain tumors.
When four families founded A Kids’
Brain Tumor Cure Foundation (AKBTC),
also known as the Pediatric Low Grade
Astrocytoma (PLGA) Foundation, in 2007,
their goals included bringing awareness to
this disease while raising research dollars
for an area that has been woefully underfunded and under-researched.
According to Dr. Charles Stiles, PhD,
Professor of Neurobiology at Harvard Medical
School and co-director of the Dana-Farber/
Harvard Cancer Center’s program on Brain
Cancer Research: “Pediatric low grade
astrocytomas have, by and large, escaped
the attention of the biomedical research
community. The lack of government and
pharmaceutical industry sponsored research
has led to a lack of mouse models and
clinical tissue samples. In order to understand
pediatric astrocytomas, we have to change
this. The support and long-term commitment
of AKBTC Foundation is crucial to the
development of new, lifesaving therapies.”
Searching for a cure
Over the last nine years, AKBTC has been a
driving force in the search for pediatric brain
cancer causes and treatments, raising over US
$15.5 million, which has been leveraged to
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drive forward a targeted research agenda and
accelerate the pace of scientific research.
With AKBTC support, the first-ever
dedicated PLGA research program was
established at the Dana-Farber Cancer
Institute. Targeted scientific studies at 23 other
medical institutions around the globe have
been funded. Project grants vary in duration
and award amount, and funding for over
three dozen basic and translational research
grants and four clinical trials has helped
drive interest in this disease sector and
attract many of the most talented scientific/
clinical minds in the world. Moreover, AKBTC
has galvanized the international research
community to focus on this rare disease
by sponsoring six international pediatric
neuro-oncology conferences, resulting in four
international research collaborations.
While providing ‘seed funding’ for
researchers to test the most promising novel
concepts is the impetus for AKBTC funding,
the ultimate goal is for the researchers to not
only prove efficacy of their research, but to
follow up with a successful grant application
to the National Cancer Institute (NCI). Within
the last five years, four research projects
have resulted in NCI approved funding,
thereby resulting in an additional US $15 $20 million in funds available.
Pushing the boundaries
“Due to AKBTC’s seed funding, we have
made critical progress on promising research
which will drive our application for significant
funding from the NCI,” said Miguel Rivera,
MD, Assistant Professor of Pathology at
Massachusetts General Hospital, Center for
Cancer Research in the United States.
With the guidance of a Scientific Advisory
Board comprised of medical/scientific experts
from a wide range of 'best in class’ medical
institutions and disciplines within the oncology
field, AKBTC continues to push the boundaries
of traditional science/clinical thinking to find
common genetic alterations in PLGA and other
brain tumors, which will enable the design of
more personalized and effective treatments for
Reprinted with permission from the 2016/2017 world edition of Brain Tumour magazine. See www.theibta.org
Above: Young PLGA brain tumor survivors/supporters at the Geared Up For Kids fundraising event
children battling all forms of brain tumours.
“Changing the landscape for this disease has
not been easy, and certainly would not have
been possible without the incredible support of
individuals and families from across the globe
that have recognized the need for a focused
research agenda in order to bring hope to those
children that are battling today…and tomorrow,”
said AKBTC Board President, AJ Janower.
He added: “Only through our united
fundraising efforts have we been able to
support the researchers who are determined
to make a difference.”
Collaboration across the globe
Whether a family creates a personal fundraising
page, holds a community event or joins
one of AKBTC’s existing fundraising events,
the collective impact has been astonishing.
Working together, uniting new families and
new friends under one fundraising and
awareness-raising umbrella will continue
to ensure that AKBTC can support the most
promising research projects in the future.
AKBTC actively promotes partnerships
with other non-profit organizations, families,
individuals, government entities, as well as
public and private medical institutions across
the globe, in order to leverage collaborations,
ensure the most productive use of funding
resources and minimize duplicative research
efforts, which might otherwise waste precious
resources and further delay finding new
treatments. Kick-starting these partnerships
will accelerate the advances in research and
treatment options available to all children
battling brain tumors.
We can’t fight this battle alone. ■
For further information, please
visit the AKBTC website at www.
akidsbraintumorcure.org or email them
at [email protected]
GFME 14 years
Providing Support and Raising
Awareness of Brain Tumours
in Ireland
www.braintumourireland.com
Email: [email protected]
GFME, Glioblastoma Fundation Michele Esnault,
established in 2001 is a French-based (Marseille), patientoriented, support group involved in brain tumors. GFME
translates and publishes in French scientific publications of
Pubmed and ASCO on primary brain tumors. The association
gives support, help, guidance on treatments and clinical trials
for adults and children diagnosed with brain tumor. GFME
works in partnership with ARTC, Brain Tumor Association For
Research to rise funds. GFME is a website http://gfme.free.fr
a quarterly magazine, a phone assistance (33)
04.91.64.55.86, and two mailing-lists
([email protected] and [email protected]).The group includes 650 patients,
care givers, friends and family members around the globe.
For more details [email protected]
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