Listening and learning were key to the Foundation’s advocacy work in 2025.

Listening and advocacy go hand in hand.

And in 2025, the Brain Tumour Foundation of Canada (BTFC) began an in-depth and comprehensive process to understand the needs of our stakeholders and community.

We wanted to hear your thoughts, opinions and suggestions about our advocacy work. We wanted to know how we could serve you better.

The first step was to develop and distribute six surveys, host virtual focus groups and launch an open webform, creating multiple opportunities for the community to provide feedback.

More than 400 people responded or participated in focus groups, highlighting barriers or challenges for us to prioritize. Respondents shared a wide range of issues, including difficulty accessing second opinions in the care process, a lack of drug coverage and financial support, the need for quicker access to new treatments, as well as the inclusion of these treatments in public drug plans. People also described challenges navigating the health-care system.

Meanwhile, we also learned more about your top priorities. These included timely and equitable access to effective treatment options, including emerging and innovative therapies; improved access to mental health and psychosocial support; faster and more accurate diagnosis; increased funding for brain tumour research; greater financial assistance; and improved drug coverage.

With this information, BTFC’s Board of Directors, Advocacy Committee and staff team advanced six existing and new initiatives and collaborations.

These included continuing our work with the Servier-led Glioma Patient Committee to improve care for the glioma patient community.

We were also proud to sign on to letters of support advocating for Ontario’s FAST program, a pilot initiative developed to facilitate quicker access to high-priority cancer drugs and to protect health research funding.

Further advocacy efforts included participating in discussions on the reimbursement review of vorasidenib. We were pleased to see progress, with a decision to reimburse costs under certain conditions.

On an international front, we continued our participation with the Brain Tumor Funders’ Collaborative. As the only Canadian organization to participate on this panel, we engaged in policy and research discussions and contributed to the funding of international grants.

Looking to the future, we are eager to continue strengthening our advocacy work. The Advocacy Committee is also exploring broader advocacy training for the Board of Directors, committee members and staff. The goal is to boost our skills and knowledge as an organization to more quickly and effectively improve patient care and access to treatments.

Advocating for every person in Canada who is affected by a brain tumour is embedded in our mission. It’s a role we take seriously as we enhance our efforts to improve access to care, to policies and programs, and to research.

Looking ahead, we will continue to represent the brain tumour community and bring the patient and family voice to every table,  activity and event we participate in or host.