Key Highlights from the National Brain Tumor Society 2014 Summit

National Brain Tumor Society’s 2014 Summit was an exceptional two-day event that brought together members of the brain tumor community from across the country to foster collaboration and increase engagement across all facets of the community. Hosted in Cambridge, MA, the Summit included our Annual Meeting, Defeat GBM Research Collaborative Meeting, Oligodendroglioma Research Roundtable, and volunteer empowerment meetings. Leaders from medical academia, biotechnology and pharmaceutical industries, government and nonprofit organizations, along with patients, survivors, and families, joined together to learn about research and public policy progress, discuss innovative National Brain Tumor Society initiatives, and celebrate leaders from the brain tumor community.

As we continue to develop strategies to meet the complexities of this disease, this year’s Summit emphasized the importance of creating systemic change at all levels.

“It is our responsibility – as the largest brain tumor nonprofit in the country, whose only goal is to improve the lives of patients – to push the systems change agenda” said National Brain Tumor Society Chairman of the Board, Michael Nathanson. “The overall goal must be to optimize the entire brain tumor research and development system. To make a more conducive environment for scientists working in labs to collaborate and share. To move discoveries to Industry, so they can more efficiently finish the pre-clinical work and take promising potential treatments to clinical trials earlier. To provide companies with better ways to speed approval for brain tumor drugs. This will save money, time, and, most importantly, this will save lives. We are moving full steam ahead with this effort.”

National Brain Tumor Society Annual Meeting

Each year, the Annual Meeting provides patients, caregivers, and families, along with leaders in research, industry, government, and the medical community the opportunity to come together for an intimate and engaging evening celebrating progress. Here are highlights from this year’s event:

Keynote – Clifton Leaf

Clifton Leaf, author of The Truth in Small Doses: Why We’re Losing the War on Cancer—and How to Win It, began the evening with an engaging keynote presentation describing how his reporting and personal experiences led to the creation of his book. Mr. Leaf emphasized the importance of the National Brain Tumor Society’s work in creating change at multiple levels of the system.

Special Message From Senator Elizabeth Warren (D-MA)

Senator Elizabeth Warren (D-MA) was unable to join us for the Annual Meeting, but wanted to send a special message to everyone who continues the fight against brain tumors.

National Brain Tumor Society Today

Michael Nathanson, Chairman of the Board of Directors, showcased pivotal work being done by the National Brain Tumor Society, including:

Defeat GBM Research Collaborative – During the two-day Summit, leaders of the four integrated projects that make-up the Collaborative – Discovery, Drug Development, Biomarker Development, and Systems Biology – provided progress reports on their respective projects. 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.

Clinical Trial Endpoints Initiative – A program with the support of the U.S. Food and Drug Administration (FDA) aimed at increasing the volume and speed of approvals for new treatments. After our first meeting with the FDA, we formed – with several other  brain tumor organizations – the Jumpstarting Brain Tumor Drug Development Coalition to build consensus in the neuro-oncology community to initiate a more widespread use of acceptable alternative endpoints in brain tumor clinical trials.

Pediatric Brain Tumor Research – The research currently being funded, in collaboration with the Brain Tumor Foundation of Canada, is looking at how a tumor forms and affects the developing brain of a child, and how potential treatments also may harm this developmental process. Knowing this information will help future pediatric drug development efforts create ways of treating these children that are both safe and effective. Looking ahead, we shared details of our next initiative Project Impact: Driving Discovery to a Cure for Pediatric Brain Tumors.

Oligodendroglioma Research Fund – Current work is underway through the first set of grants in our Oligodendroglioma Research Fund to two researchers whose projects we believe can really help in this area. Those two grants went to Drs. David Louis and Dr. Anders Persson. Dr. Louis and his team will seek to identify the elements that drive and contribute to the growth of oligo tumors using next-generation sequencing tools and techniques. Meanwhile, Dr. Persson is developing predictive models for oligo tumors that we hope will not only aid his discovery efforts but those of Dr. Louis’ team and others, as well. Looking forward, an upcoming second-round of funding will go to Drs. Robert Jenkins and Daniel Lachance of the Mayo Clinical, who are focused on promising research that will allow oligo drug development efforts to make a big leap toward making the disease manageable.

Community Leadership Awards

Our Community Leadership Award recipients were honored for their passion and commitment to the brain tumor community. The following individuals and families were recognized:

For Programs/Events

Bill Coffman was recognized for his years of ongoing devotion to the cause and relentless fundraising support as part of the Boston Brain Tumor Ride since 1998. For 17 years, Bill has traveled from Florida to participate in the Ride and continues to be a top fundraiser for the event. Bill’s efforts have led to more than $334,000 raised in support of the organization.

For Awareness

This award was presented to the parents of Emily Morrison, Alice and Mack Morrison, in honor of Emily’s optimism and unrelenting dedication to raising brain tumor awareness and advocating for critical issues affecting the brain tumor community. In addition to Emily’s fierce commitment to raising awareness for everyone impacted by this disease, her team, Team Sweet Emily as part of the New York Brain Tumor Walk has been a top fundraiser for three years.

For a Colleague Organization

Mario Lichtenstein, founder of Voices Against Brain Cancer was recognized for his passion and incredible commitment to raise brain tumor awareness, fund research, and support patients and families through his organization. Accepting the award on his behalf was National Brain Tumor Society board members Rabbi Eric Wisnia and Dr. Susan Pannullo.

Feldman Founder’s Award

Dr. Darell Bigner, Director of the Preston Robert Tisch Brain Tumor Center and the Pediatric Brain Tumor Foundation Institute at Duke University and Leader of the Neuro-Oncology Program of the Duke Comprehensive Cancer Center, received the Feldman Founder’s Award for his decades of outstanding contributions and invaluable impact on the field of brain tumor research. Dr. Bigner has successfully implemented several internationally recognized programs targeting brain tumors using radiolabeled monoclonal antibodies, immunotoxins, and tumor-specific vaccination. Dr. Bigner and his colleagues have identified several major genetic aberrations in GBM tumors and low grade gliomas, including EGFR, IDH1 and IDH2, and TERT, providing novel diagnostic that provided novel diagnostic and therapeutic implications. They are making huge strides in identifying new drugs and those not previously thought to be active against CNS tumors. Currently, Dr. Bigner is overseeing a promising clinical trial utilizing a genetically engineered poliovirus to treat glioblastoma.

The Feldman Founder’s Award recognizes individuals or laboratories for a transcendent scientific discovery, an exceptional body of work, or leadership that had a significant and sustained impact on the brain tumor community consistent with National Brain Tumor Society’s mission to find better treatments, and ultimately a cure, for people living with a brain tumor. Read more about the Feldman Founder’s Award, our initiatives, and funded researchers in the 2014 Summit program book.

Click here to view a press release about the National Brain Tumor Society 2014 Summit. 

Thank you to our 2014 Summit sponsors:

Colony Group

Genentech