Our Impact

More than four decades of progress, partnership, and persistence

Since 1984, the Tumour Foundation of BC has played a meaningful role in improving understanding, care, and connection for people affected by neurofibromatosis (NF) in British Columbia, and beyond.
What began as a grassroots effort has grown into a trusted provincial voice, contributing to education, advocacy, and research while centering the lived experiences of individuals and families affected by NF.

People reached through the NF Health Line and direct support
Facebook Engagement
People reached through the NF Health Line and direct support
Daily commuters saw our SkyTrain campaign through May and June

Advancing Knowledge Through Community-Driven Research

Long before NF research received widespread attention, families in British Columbia were contributing to studies that helped shape global understanding of the condition. Through partnerships with clinicians and researchers, and with the participation of the NF community, the Foundation has supported research that has contributed to:

  • Greater understanding of the natural history of optic gliomas in children
  • Development of NF1-specific growth charts, now used internationally
  • Insights into how NF2 mutation types relate to disease severity, helping researchers interpret treatment outcomes
  • Identification of under-recognized health issues in NF, including dental health concerns, vascular risk, and vitamin D deficiency

Building Bridges Between Families and Experts

Education has always been central to our impact. Through annual family symposiums and educational events, the Foundation has created opportunities for individuals and families to:

  • Hear directly from medical experts
  • Ask questions in accessible, supportive settings
  • Build connections with others who understand life with NF
  • These gatherings reduce isolation, increase confidence, and help families feel better equipped to navigate care.

Advocacy That Leads to Better Understanding

Advocacy is woven throughout the Foundation’s history. Our work has included:

  • Supporting individuals and families in navigating healthcare systems
  • Helping community members understand care options and prepare for medical conversations
  • Raising awareness among physicians and allied professionals about NF-related needs
  • Identifying gaps in care consistency and access

This advocacy is grounded in respectful collaboration, informed by lived experience, and focused on improving outcomes, not only for individuals, but for the system as a whole.

Investing in Research Capacity

  • In the mid-1990s, the Foundation began directly supporting NF research by funding the development of the NF Clinical Database at the University of British Columbia. This early investment helped:
  • Attract and retain NF researchers in British Columbia
  • Support graduate training and academic inquiry
  • Strengthen Canada’s contribution to international NF research efforts

These foundational investments continue to influence how NF research is conducted and connected today.

Impact Beyond Numbers

Behind every publication, event, and resource is a person or family who asked a question, shared their experience, or contributed their time -often in the hope that future generations would have clearer answers and better care.

Knowing we weren’t alone, and that our experience mattered, changed everything.

Our impact is measured not only in milestones, but in moments:

  • When someone feels heard
  • When a family understands what to ask next
  • When knowledge reduces fear
  • When community replaces isolation
2025 Impact Report

Looking Ahead

While there is more work to be done, particularly in advancing access to specialized care and emerging treatments, the Foundation’s future is built on decades of community-driven impact. What we’ve done together shapes what’s possible next.

Did you know?

NF1-specific growth charts used worldwide were informed by community-supported research.

BC families and the Foundation have contributed to over 60 NF1 and NF2 research publications, supporting more than two-thirds of the studies they were involved in.

BC families helped advance understanding of optic gliomas in children with NF.