Last July, the National Brain Tumor Society marked the 10-year anniversary of the 2008 merger that brought together its legacy organizations — The Brain Tumor Society (TBTS) and the National Brain Tumor Foundation (NBTF) — and created NBTS as it stands today. And on Sunday, June 23, 2019, at Crissy Field in San Francisco, NBTS will celebrate the 25th anniversary of one if its original signature events, the Bay Area Brain Tumor Walk, which has roots that stretch further back to the days of NBTF.
The anniversary of this event also highlights the enduring relationship NBTF — and now NBTS — has with the Brain Tumor Center at the University of California, San Francisco, which will aptly serve as the platinum sponsor for the 25th Annual Bay Area Brain Tumor Walk.
NBTF originated in the San Francisco Bay Area in the early 1980s when two families, feeling helpless following the loss of their sons to brain tumors, asked themselves the same question: “What can we do to help fight back against brain tumors?”
Well-known San Francisco-area civic leader and World War II hero, Walter Newman, was envisioning how he could combine his expertise in community organizing to help mend the hole left by the death of his son to a malignant brain tumor. His quest led him to cross paths with David and Nora Plant, who’d also lost a son to the disease.
While very few effective treatment options exist for brain tumors today, the situation was even more dire in the 1980s – before the advent of temozolomide (Temodar), Optune, Avastin, and corresponding improvements in technologies related to medical imaging, diagnosis, surgery, and radiation. Further, the ability to simply hop on the internet to search out information, research, and guidance for a brain tumor diagnosis was not yet an option.
Thus, the Newmans and Plants leaned on the advice of an early pioneer in neuro-oncology, Dr. Charles Wilson, who ran the Brain Tumor Research Center at UCSF. When asked what they could do to make something positive out such a shared negative experience, Dr. Wilson offered that they could start raising funds for his research lab. So, after recruiting a number of additional families in the Bay Area that had also been touched by a brain tumor diagnosis, the Newmans and Plants started raising money for research, including through an annual fundraising and awareness walk that became the precursor of today’s slate of NBTS signature Brain Tumor Walks, the annual Angel Island Adventure events.
From the early days of NBTF and the Bay Area Brain Tumor Walk (which morphed out of the original Angel Island Adventure event) to the present day, the connection with the UCSF Brain Tumor Center has been a constant. Even after NBTF expanded its research grants program beyond funding solely Dr. Wilson’s lab, the organization continued to support studies at UCSF that have helped advance brain tumor research in a number of critical ways – a tradition that has continued to this day, long past the NBTF-TBTS merger.
In fact, since 2000, NBTF/NBTS as provided more than 15 individual grants to research efforts at UCSF. Some of the accomplishments that have stemmed from this funding include (but are certainly not limited to):
- In 2001, Dr. Arturo Alvarez-Bulla revealed that neural stem cells may be involved in the initiation and/or development of adult glioma brain tumors using funding provided by NBTF.
- In 2007, Dr. Susan Chang used grant funding from NBTF to create a comprehensive survey of the care, survivorship, and quality of life of brain tumor patients. Results from this survey provided important information and knowledge to inform best practices for doctors who treat brain tumor patients.
- In 2008, NBTF provided a grant to Mary Lovely, then an RN at UCSF, to study the lived experience of long-term GBM survivors. This work identified the resources needed to more appropriately care for these patients.
- In 2010, NBTS provided funding to Dr. Andrew Parsa (who has since, tragically, passed) while he was a researcher at UCSF to develop a type of tumor-fighting vaccine known as a “heat-shock peptide” vaccine. His work led to the creation of treatment now know as Prophage, which is currently being evaluated in a clinical trial at the National Cancer Institute in conjunction with the immunotherapy pembrolizumab in patients with newly diagnosed glioblastoma.
- In 2010 and 2013, NBTS funding helped UCSF scientists create much-needed new laboratory models to study pediatric glioblastoma and oligodendroglioma tumors with an IDH1R132H mutation, respectively.
Currently, via the Sharpe-NBTS Brain Cancer Research Awards, NBTS is funding a research project at UCSF that aims to make a 3D “map” of the different mutations found within a GBM tumor, that will help researchers identify potentially effective treatment combinations.
In addition to grant funding, the NBTF/NBTS-UCSF Brain Tumor Center relationship encompasses active and ongoing collaboration between the advocacy organization and leading researchers at the hospital. For example, Dr. Mitch Berger currently serves on the Strategic Scientific Advisory Council to NBTS’ Defeat GBM Research Collaborative, while Dr. Joe Costello serves on the organization’s overall Scientific Advisory Committee. Drs. Berger and Costello also continue to be regular participants in NBTS-hosted research meetings and workshop — like the organization’s Research Roundtables and Scientific Summits — along with their colleagues including Drs. Chang, Hideho Okada, Manish Aghi, Sarah Nelson, Sabine Mueller, and Michael Prados.
It is only fitting that the UCSF Brain Tumor Center will be on hand to sponsor the 25th anniversary of the Bay Area Brain Tumor Walk and to honor our partnership and many years of UCSF’s excellence in research and care for the community.
Those interested in joining Team UCSF at the 25th Annual Bay Area Brain Tumor Walk can view its team page here.