Colette Madsen (M.A.)

President – Leads the board, helps guide strategy and governance

Colette brings over 25 years of experience in the nonprofit social service sector, specializing in program management and community initiatives that support children, youth, and families. As the mother of an adult son with NF1, she has long relied on the information and community provided by the Tumour Foundation of BC. Colette is committed to raising awareness of NF and helping ensure families have access to the resources and support they need.

Kirsten Niedtner

Vice-President – Supports the Chair and may step in when needed

Kirsten was diagnosed with NF1 as a child and is passionate about raising awareness of rare diseases and reducing stigma. She is a professional puppeteer who has toured British Columbia performing educational shows for elementary schools. Through her creative work and lived experience, Kirsten hopes to bring new perspectives and greater awareness to the NF community.

Shawn Baturin

Treasurer – Oversees financial accountability and reporting

Shawn was diagnosed with NF1 as a child and has been involved with the Tumour Foundation of BC since 2011 through research participation, charity events, and fundraising efforts. He is currently completing a Business Degree in Accounting at Kwantlen Polytechnic University. Shawn is passionate about raising awareness of NF and strengthening support for those affected by the condition.

Samyuktha Suresh

Secretary – Ensures meeting records

Samyuktha is a scientist whose research focuses on identifying novel drug targets and developing personalized therapies for cancer. She completed her PhD at Institut Curie in Paris and pursued postdoctoral training at Stanford University before moving to Canada. Samyuktha is passionate about advancing research and raising awareness to improve care for individuals affected by NF.

Bernice Chan, RN

Bernice is a registered nurse with over a decade of experience caring for diverse and vulnerable patient populations. Diagnosed with NF1 as a child, she brings both professional expertise and lived experience to her work with the Tumour Foundation of BC. Bernice is passionate about supporting individuals affected by rare conditions and advocating for improved care and awareness.

Edie Dullaghan, Ph.D.

Edie is a scientist with extensive experience in drug discovery and research leadership across multiple disease areas, including infectious diseases and cancer. She completed her PhD in molecular genetics at the National Institute for Medical Research in the United Kingdom. Following her grandson’s diagnosis with NF1, Edie became committed to supporting the NF community and advocating for improved care and research.

Lauren Jones

Lauren holds a BSc in Biochemistry from the University of British Columbia and works at BC Cancer’s Hereditary Cancer Program, where she supports research focused on predicting early cancer development. Her background includes nonprofit leadership, advocacy, and event planning through several student-led organizations. Lauren is committed to improving access to care and advancing outcomes for the NF community.