As a scientist, John spent 18 years conducting research to identify the genetic causes of common and rare diseases, starting with his PhD research in Scotland before moving to the US and more recently Canada. He has led research teams in university medical schools, non-profit research organizations, as well as the pharmaceutical industry. Additionally, John was Director of Precision Medicine and Genetics at the Ministry of Health of British Columbia, where he worked closely with his colleagues and stakeholders across the healthcare system and health authorities, to improve health outcomes for almost 5 million British Columbians through the delivery of precision medicine. John is passionate about complex genetic diseases that are difficult to treat and traditionally neglected, like NF, and how modern and complex medicines along with improved care delivery can positively impact patients and their families.

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.

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.

Kirsten Niedtner, (Bachelor of Arts, English) 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.

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.

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.

Shawn Baturin 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.

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.

Desirée brings extensive non-profit experience to her role as the Executive Director at the Tumor Foundation. Having worked at NF Canada, the BC Neurofibromatosis Foundation, and the Learning Disabilities Association, she has become a strong advocate for the children and adulates battling NF. Desirée loves inspiring others and works as a coach and mentor for new leaders in the charitable sector.

Delina has a strong background in administrative processes and has worked as an Executive Assistant in many positions. Delina is an expert at software programs, project management and bookkeeping. Delina enjoys her life in Victoria, BC and her family life outside of work.

Silvana embarked on her nursing journey in 2003, delivering care across diverse healthcare environments including medical, surgical, Intravenous therapy, surgical daycare, and presurgical screening. Her profound dedication to patient advocacy and empathetic nursing approach, coupled with a keen interest in healthcare education, have led her into a more recent position as a Faculty of Health College Instructor. Silvana is steadfast in her mission to bolster and empower patients throughout their healthcare encounters, all while acknowledging and addressing the distinctive challenges within our present healthcare environment.

Tiffany, a former judo athlete, has found new joy in the social media marketing space. She brings a unique blend of creativity and determination to her role at the Tumour Foundation of BC. Outside or work, Tiffany enjoys coaching athletes and experimenting with new recipes in the kitchen. With a passion for making a positive impact, she is dedicated to raising awareness and fostering engagement within the NF community.