Colette Madsen (M.A.)

President

Colette has over 25 years experience in the non-profit community social service sector in program management and project development. She enjoys working with multidisciplinary teams whose aims are to improve the lives of vulnerable children/youth and families. As a mother of a (now adult) son with NF1, she has for many years benefited from the information and knowledge gained through symposiums; including, the educational resources to advocate in the school system. She is privileged to have this opportunity to assist in fund development, event support, to raising the awareness of NF, and addressing specific needs of children/youth with NF.

Kirsten Niedtner

Vice President

Kirsten was diagnosed with NF1 as a child. Her experiences sparked a need to advocate for those facing rare and often overlooked diseases and challenges and to work towards elimination of the stigmas associated with it. She has been a puppeteer since 2017 and has toured the province as part of a team performing shows at elementary schools. Currently she is working towards making the transition from stage puppetry to doing puppetry for film. Kirsten hopes to use her lifetime of experiences with NF and her creative background to bring new ways of looking at NF as well as more awareness to the disease.

Shawn Baturin

Treasurer

Shawn was diagnosed with NF1 as a child. Currently, he is finishing off his Business Degree in Accounting at Kwantlen Polytechnic University. He has been involved with the Tumour Foundation of BC since 2011, by participating in various studies, charity events, and sporting a jersey with the charity’s logo in triathlons. Shawn wants to raise awareness of NF to the broader community so people can get more support they need.

Samyuktha Suresh

Secretary

As a scientist, Samyuktha has spent years researching novel drug targets for breast cancer treatment. She finished her PhD in Paris at the Institute Curie, moved to Stanford University for a Postdoctoral Training, and more recently moved to Canada. She has dedicated her research career to understanding the complexities of cancer and is committed to developing personalized targeted therapies for patients. In addition to her research endeavors, Samyuktha is passionate about raising awareness for Neurofibromatosis and is focused on contributing efforts to improve care for patients diagnosed with this condition. With a scientist’s training and a compassionate approach, Samyuktha aims to make a meaningful impact in the field of cancer research and patient advocacy.

Bernice Chan

Bernice Chan is a dedicated and compassionate registered nurse with over a decade of extensive experience across a range of clinical settings. Bernice has developed a deep understanding of patient care, working with diverse and vulnerable populations. Her strong communications skills, collaborative nature, and unwavering dedication to improving patient outcomes has made her an asset. Bernice holds a Bachelor of Science in Nursing from Kwantlen Polytechnic University, where she was recognized on the Dean’s Honor Roll, reflecting her academic excellence and commitment to the nursing profession. Throughout her career she has been a dependable and motivated team player, consistently demonstrating a work ethic grounded in empathy, reliability, and a passion for providing high-quality care. Beyond her clinical achievements, Bernice has a personal connection to the world of patient advocacy. Diagnosed with Neurofibromatosis Type 1 (NF1) as a child, she has experienced firsthand the challenges of living with a rare condition. This personal journey has fueled her passion to support underrecognized and vulnerable groups, particularly those affected by tumors and rare diseases. Motivated by her own experiences, Bernice has dedicated countless hours volunteering for the Tumor Foundation of BC, providing invaluable emotional and practical support to those facing similar challenges. Her personal and professional experiences have deepened her desire to advocate for individuals with conditions like NF and other tumor-related illnesses, driving her to make a meaningful impact within this community.

Edie Dullaghan, Ph.D.

As a scientist, Edie has worked in numerous roles investigating promising targets for drug development against a host of diseases, including multi-drug resistant bacterial infections, COPD and cancer. Over the course of her career, she has managed several large-scale R&D programs, including leading a global collaboration with the Centre for Drug Research and Development, LifeArc and The Defence Science and Technology Laboratories (DSTL) in the United Kingdom using a novel approach in drug target discovery that capitalises on areas of commonality across pathogens. Dr. Dullaghan obtained her PhD in the U.K. at the National Institute for Medical Research, studying the molecular genetics of the SOS response in Mycobacterium tuberculosis, the causative agent of TB. Following the diagnosis of her grandson with NF1 Edie has a new goal; to become involved in the NF1 community and to be an advocate for the resources and care this patient community needs.

Lauren Jones

Lauren is a recent graduate from the University of British Columbia, where she earned a BSc in Biochemistry with distinction. She completed a co-op placement at BC Children’s Hospital Research Institute, where she developed a deep interest in rare disease patient outcomes and advocacy. She currently works at BC Cancer’s Hereditary Cancer Program, which provides care and cancer risk assessment for individuals with inherited conditions, including those with NF1. In her role, she coordinates a research study focused on predicting early cancer development through a blood test. Lauren has held executive roles in multiple student-led nonprofits, gaining extensive experience in nonprofit leadership, advocacy, event planning, and fundraising. Through her work with the Tumour Foundation, Lauren is committed to promoting equitable access to care and improving care outcomes for the NF community.