Our History

Our roots date 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 came together to form the National Brain Tumor Society.

The National Brain Tumor Foundation (NBTF) was founded in 1981 by a small group of San Francisco-based healthcare providers and people whose lives had been affected by brain tumors. The Foundation’s mission was to provide comprehensive resources and support services for the brain tumor community. During its 30-year tenure, 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 treatments centers in the United States.

The Brain Tumor Society (BTS) – was founded in Boston in 1989. Bonnie Feldman established the group, along with others, after the loss of her 17-year-old son, Seth, to a brain tumor. After its formation, BTS played an instrumental role in raising funds to invest in brain tumor research. BTS funded pioneering research during its 20 years, including more than 90 scientists now dubbed a “who’s who” of brain tumor experts.

In 2008, the leadership of the National Brain Tumor Foundation and the Brain Tumor Society decided to strengthen their collective efforts by uniting to form the National Brain Tumor Society. In March 2010, the National Brain Tumor Society grew even more by joining forces with the Kelly Heinz-Grundner Foundation (KHG) – a Delaware-based group dedicated to raising awareness about brain tumors. KHG was founded in 2004 as a tribute to Kelly, who died in September 2004, after a two-year battle with a brain tumor.

As the brain tumor landscape has changed, we have adapted the Organization to be able to make the most impact given our unique core strengths and deep relationships. We leverage our size, breadth, unparalleled in-house scientific and public policy capacity, and strong base of key advisors across academia, industry and government, to drive change.