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.
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.
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.
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.