National Brain Tumor Society 2014 Summit Reviews Systemic Change Happening in Brain Cancer Research & Development, Honors Community Leaders

National Brain Tumor Society, the largest nonprofit dedicated to the brain tumor community in the United States, hosted its 2014 Summit and Annual Meeting in Cambridge, MA, on October 1-2. The yearly event brought together a cross-section of the brain tumor community, including neuro-oncologists, medical academics, biotechnology and pharmaceutical executives, representatives from the National Institutes of Health and other nonprofits, as well as brain tumor patients, survivors, caregivers, and advocates.

This year’s Summit focused on the theme of creating systemic change in the way brain tumor treatments are discovered, developed, tested, and evaluated. Attendees discussed ways in which advocacy, public policy, and research funding can together be leveraged to improve the entire brain tumor research, development, and clinical trial process.

“It is our responsibility – as the largest patient advocacy organization in the brain tumor space – to push an agenda of systems change,” said National Brain Tumor Society Chair Michael Nathanson. “Our leadership, as an objective party, needs to focus on continuing to bring the stakeholders in brain tumor research and development together to address the barriers and increase progress. Collaboration and better paths to validating and commercializing newfound discoveries will be essential. With a more efficient approach, we will save time, money, and most importantly, lives. We are moving full steam ahead with this effort.”

A scientific session discussing current progress for the Defeat GBM Research Collaborative kicked off the Summit. The session included an overview of the program, followed by presentations and updates from the leaders of the four integrated projects that make-up the Collaborative – Discovery, Drug Development, Biomarker Development, and Systems Biology. The teams discussed how, in less than a year, Defeat GBM’s collaborative nature, and system for bi-directional information sharing, has already enabled the researchers to make early progress in identifying new, actionable treatment targets, as well as predictive biomarkers for resistance and response. In fact, the teams believe they may be on the verge of initiating the program’s first clinical trial, a topic which was later discussed with Defeat GBM’s scientific advisors to decide what the best approach might be for moving discoveries from the Collaborative into the clinical setting.

“It was very rapid from pre-clinical [research], to being ready to launch a multi-institution, multi-investigator clinical trial in about one year,” said Webster Cavenee, PhD, of Ludwig Cancer Research, the University of California, San Diego, and a leader of the Collaborative. “This shows Defeat GBM can accomplish its goal.”

The session ended with core teams and advisors discussing possible areas to expand collaboration and additional directions for future research to explore, including adaptive clinical trials, immunotherapies, and innovative imaging modalities.

The Annual Meeting dinner, which followed the Defeat GBM scientific session, included a keynote speech from Clifton Leaf, author of The Truth in Small Doses: Why We’re Losing the War on Cancer – and How to Win It; a State of the Organization report from Nathanson; awards presentations; and other discussions of engagement and community building.

Mr. Leaf’s keynote address lent credence to the progress resulting from the collaborative efforts of Defeat GBM as discussed earlier, as well as the theme of systems change, by stressing the need for the field of cancer research to transform into a more efficient and cooperative enterprise. Nathanson offered examples from the National Brain Tumor Society’s current program agenda of how the Organization is seeking to create the necessary improvements to help speed the path to better treatments, and ultimately, a cure.

Honored during the awards portion of the Annual meeting were the following individuals for their steadfast commitment to the brain tumor community:

• Bill Coffman (Community Leadership for Programs/Events) – Coffman was recognized for his tremendous dedication to fundraising as a long-time participant in the Boston Brain Tumor Ride. Coffman has participated in the event since 1998, and travels from Florida every year to take part. He has raised more than $330,000 to-date.
• Mario Lichtenstein (Community Leadership for a Colleague Organization) – Founder of Voices Against Brain Cancer, Lichtenstein has created an organization that adeptly provides support to brain cancer patients, raises awareness, and funds critical research.
• Emily Morrison (Community Leadership for Awareness) – Accepting the award in Emily’s honor, Alice and Mack Morrison (Emily’s parents) paid tribute to this incredible young women’s courage, passion, and optimism while battling her own brain cancer, becoming a top fundraiser, and leading advocate in the brain tumor community.
• Dr. Darell Bigner, MD, PhD (Feldman Founder’s Award for outstanding contributions to the field) – The director of the Preston Robert Tisch Brain Tumor Center and Pediatric Brain Tumor Foundation Institute at Duke University, Dr. Bigner has been a luminary in brain tumor research for decades and made countless contributions to the understanding of the disease and potential treatment modalities. Dr. Bigner discussed some of the exciting work emanating from his laboratory at Duke.

The second day of the Summit featured an Oligodendroglioma (Oligo) Research Roundtable, bringing together the grantees of National Brain Tumor Society’s Oligo Research Fund and other experts in the field to discuss the potential for collaboration and other ways to speed research and development to deliver progress to this underserved patient population. In addition, a series of Volunteer Training sessions for key community leaders in the National Brain Tumor Society’s national events and advocacy programs was also held at the Summit.

To learn more about the National Brain Tumor Society 2014 Summit, sponsored by The Colony Group and Genentech, including a full list of speakers, presentation topics, awards, event highlights, and photos, visit: http://www.braintumor.org/about-us/summit/.

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