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National Brain Tumor Society Teams Up With The V Foundation for Cancer Research To Fight Pediatric Brain Tumors

2015-10-01

National Brain Tumor Society, the largest nonprofit organization dedicated to the brain tumor community in the United States, today announced that it teamed up with The V Foundation for Cancer Research, one of the nation’s leading cancer research funding organizations, to fund pediatric brain tumor research.

Both organizations plan to help fund a new, innovative pediatric clinical trial, which will be a key aspect of the National Brain Tumor Society’s Project Impact: Defeat Pediatric High-Grade Glioma Research Collaborative.

“It was clear from very early on in our conversations with The V Foundation executives that our joint interests in making progress for this vulnerable patient population are in complete alignment,” said David Arons, interim chief executive officer, National Brain Tumor Society. “NBTS and The V Foundation both understand that the status quo in pediatric brain cancer survival and quality of life are unacceptable. New approaches to research, combined with cutting-edge science and greater collaboration, are needed to make rapid progress and drive true impact for the thousands of children diagnosed with this disease every year.”

The V Foundation’s support comes through their “Fund a Need” program, which selected pediatric brain tumors as its key area of focus for 2015, and was aided by a record $10.6 million raised at the group’s 17th Annual V Wine Celebration, which was held in August in Napa Valley, California and hosted by Duke University Men’s Basketball Head Coach Mike Krzyzewski.

National Brain Tumor Society will facilitate the collaboration through Project Impact: Defeat Pediatric High-Grade Glioma Research Collaborative. NBTS’ latest pediatric initiative, Project Impact combines efforts in funded research (the Defeat Pediatric High-Grade Glioma Research Collaborative) and public policy to confront inefficiencies that currently exist in both the pediatric brain tumor preclinical research system and pediatric cancer clinical trial environment.

“Pediatric brain tumors are an area of high unmet medical need,” said Susan Braun, CEO of The V Foundation. “Because of this The V Foundation chose to place a particular emphasis of our efforts this year on work to help further the cause by investing significant resources into the fight and joining forces with other leaders in the field like NBTS.”

Efforts within the Defeat Pediatric High-Grade Glioma Research Collaborative will further discovery research, biomarker identification, creation of informative disease models, and expedite therapeutic intervention through both preclinical testing and smart clinical trials. This highly integrated, four-core initiative is aimed at moving science from research into the clinic in the next five years.

The alliance with The V Foundation will specifically focus on the “smart clinical trial” core, which will look to begin by partnering with leaders in pediatric brain tumor research and treatment to complete a precision medicine-based clinical trial that will utilize state of the art, next generation sequencing to determine individual treatment plans for patients with pHGGs, which will feed data back into other cores.

This year in the U.S., an estimated 4,620 infants, children, and adolescents will receive a brain tumor diagnosis. This rate of occurrence, unfortunately, now places brain tumors atop the list most common cancers in the pediatric population. Of these cases, approximately 20% will be given the diagnosis of an aggressive class of brain tumors known as pediatric high-grade gliomas (pHGGs). Tragically, pHGG patients are faced with five-year survival rates of only 15-30%. Even more devastating, a unique subgroup of pHGG patients diagnosed with a tumor known as diffuse intrinsic pontine glioma (DIPG) have a mean survival of only nine months. These rates have remained relatively unmoved in more than 40 years, yet there has still never been a drug developed specifically to treat pediatric brain tumors.

Although the past several years have marked a period of incredible advancement in our understanding of the biology of pHGG, this body of knowledge has not yet translated into better treatments. To date, 250+ clinical trials evaluating radiotherapy along with conventional chemotherapy, as well as newer biologic agents, have failed to improve survival for this vulnerable patient population.

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