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Oligodendroglioma Research Fund: An Update & History

Oligodendroglioma is a rare form of brain cancer, making up only 4% of all diagnosed primary brain tumors. Because of its relative rarity, research efforts on this tumor type lagged behind many more prevalent forms of brain tumors and cancer. To address this issue, the National Brain Tumor Foundation, later merging with the Brain Tumor Society to become the National Brain Tumor Society, began accepting designated donations to fund oligodendroglioma-specific research projects.

In 2011, efforts to increase the focus on oligodendroglioma research kicked into high gear through the leadership of the family of Zach and Spencer Greene, two brothers both diagnosed with oligo tumors, as well as other families and individuals committed to finding new treatments for this tumor. The Greene’s contacted the National Brain Tumor Society and helped us formalize our Oligodendroglioma Community Research Fund.

The Community Research Fund model is the only vehicle of charitable giving in the country that allows contributors to pool 100% of their donations for the study of a particular type of brain tumor, while ensuring the research meets strict scientific standards through the expertise of the National Brain Tumor Society’s distinguished Scientific Advisory Council.

Through the incredible response of the oligo community, including families like the Greene’s, we were able to launch our first project out of the Community Research Fund in 2012 – the aptly named Oligodendroglioma Research Fund. That year, the National Brain Tumor Society convened a panel of leading oligo researchers to form an expert Advisory Council chaired by visionaries, Dr. Gregory Cairncross, University of Calgary, and Dr. G. Yancey Gillespie, University of Alabama at Birmingham. This group identified three specific areas of research that hold the most promise to deliver progress to the oligo community: genomics, glioma stem cell and lineage biology, and tumor modeling. A Request for Applications was issued at the end of 2012 and experienced an overwhelming response from the scientific community. The Oligo Advisory Council then performed a rigorous review process to select the applications that were determined to best meet the needs of the current oligo research landscape.

In 2013, we announced Dr. David Louis, MD, of Massachusetts General Hospital and Harvard Medical School, and Dr. Anders Persson, PhD, of The University of California, San Francisco as the first grant recipients of the Oligodendroglioma Research Fund. Drs. Louis and Persson are both internationally recognized leaders, and have years of experience, in the field of study of malignant brain tumors. Both researchers are leading projects that seek to determine what causes Oligo tumors to develop and subsequently grow through next-generation sequencing (Louis), and tumor modeling (Persson).


Dr. David Louis speaking at the 2013 National Brain Tumor Society Annual Meeting

Together these projects will lead to a better understanding of the drivers of oligo tumors, and provide information on potential targets for future treatment development. These researchers will also be gathering with other leading experts in oligodendroglioma at our upcoming 2014 Summit to discuss the state of the field, their research projects, and strategies to accelerate progress towards better treatments and ultimately a cure.

While the National Brain Tumor Society remains committed to the success of our Oligodendroglioma Research Fund, the Greene family and a group they started called OligoNation has branched out to take on their own leadership role in the field. They have transformed OligoNation into its own tax-exempt nonprofit to promote oligo awareness and research. We know they will continue their hard work funding oligo research and we look forward to future opportunities to work together more.

As the work of the Oligo Research Fund continues, we are pleased to announce that funding has been committed to a third project led by Drs. Jenkins and LaChance of the Mayo Clinic. This will increase our total multi-year grant commitments to $900,000 of the more than $1.3 million raised to date for high-impact research projects that will improve the lives and outlook for patients diagnosed with oligo tumors.

We look forward to announcing new, exciting updates in the near future. Stay tuned.

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