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Our history traces back to the 1980s, with the founding of our two legacy organizations — the National Brain Tumor Foundation and the Brain Tumor Society. In 2008, the two groups strengthened their collective efforts by merging to form the National Brain Tumor Society (NBTS).

National Brain Tumor Foundation

The National Brain Tumor Foundation (NBTF) was founded in 1981 when Walter Newman and David and Nora Plant, 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?”

The Newmans and Plants started fundraising to help support Dr. Charles Wilson’s research lab at UCSF. 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.

The Foundation’s mission was to provide comprehensive resources and support services for the brain tumor community. Throughout its nearly 30 years, the group established a number of pivotal programs for the community including the first national conference for people with the disease, a national volunteer support network, and the only searchable database of brain tumor treatment centers in the United States.

Brain Tumor Society

The Brain Tumor Society (BTS) was founded in Boston in 1989. Bonnie and Sid Feldman – as well as Richard B. Ross and other committed volunteer leaders – established the organization after the loss of their son Seth to a brain tumor. After its formation, BTS played an instrumental role in raising funds to make grants for brain tumor research. BTS funded pioneering research during its 20 years, including more than 90 scientists that represent a “who’s who” of brain tumor experts. BTS grants led to key breakthroughs in the discovery of brain tumor biology and patient treatments.

Kelly Heinz-Grundner Foundation

Two years after the merger of these organizations in March 2010, the Kelly Heinz-Grundner Foundation (KHG) – a Delaware-based group dedicated to raising awareness about brain tumors – merged with NBTS. KHG was founded in 2004 as a tribute to Kelly, who died in Sept. 2004, after a two-year battle with a brain tumor.

Collaborative Ependymoma Research Network

Collaborative Ependymoma Research Network (CERN) began in 2007 when clinicians, researchers, and the family of ependymoma survivor, Dallas Mathile, came together to improve the lives of those affected with ependymoma. After years of collaboration with NBTS, CERN became a designated program of NBTS in Sept. 2020. 

NBTS Today

Today, the National Brain Tumor Society continues its legacy of driving research accomplishments and discoveries toward treatments, servicing, guiding, and preparing patients to face their disease, changing public policy agendas through country-wide advocacy, and providing a powerful voice that unites the brain tumor community.

As a program of NBTS, CERN continues to advance ependymoma research by supporting scientific fellowships and clinical trials, sponsoring professional conferences and symposia, and investigating risk factors for the disease. 

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