The date and location has been set for the 2024 Annual Symposium!

Saturday, October 5th
Hilton Hotel Metrotown, Burnaby

Join us for an immersive and empowering experience at the 2024 Fall Symposium, where families impacted by neurofibromatosis (NF) come together once again!

What to Expect:

Prepare to be inspired by a lineup of distinguished speakers hailing from both Canada and the US, all focused on diverse aspects of navigating life with neurofibromatosis. Our event will delve into cutting-edge topics, including advancements in NF skin management, breakthroughs in drug research and clinical trials across Canada and much more.

Your Registration Includes:

  • Indulge in a delectable hot breakfast, setting the stage for new friendships to blossom.
  • Engage with four captivating guest speakers, delivering valuable information that empowers.
  • Savour a delightful catered lunch, enhancing both your palate and networking opportunities.

Secure Your Early Bird Ticket:

Don't miss out on the chance to expand your knowledge of NF, forge meaningful connections, and revel in the joy of learning. Register today at the early bird price to guarantee your place at this enriching symposium that promises education, camaraderie, and an abundance of enjoyment!

Accommodations:

This year’s event is being held at the Hilton Hotel Metrotown Burnaby located at 6083 McKay Avenue You can book your hotel room by clicking on the button below.

Parking:

Hilton Vancouver Metrotown’s underground self-parking is located below the Hotel and Crystal Mall. The parkade is accessible off McKay Avenue and Kingsborough Street. The clearance of the parkade is 6’6”. Offsite parking is available for over-height vehicles and tour buses and must be requested ahead of time.

Transit:

The hotel is located one block from Metrotown Skytrain Station. The 19 and N19 transit lines have routes that pass near Hilton Vancouver Metrotown.

Join Us for the 2024 NF Symposium

We are thrilled to present a diverse line-up of expert speakers and inspiring patient advocates at this year's NF Symposium, where we will explore the latest in NF research, patient care, and personal stories of resilience.

Featured Presentations:

Dr. Linlea Armstrong:   BSc, MD, Medical Geneticist and Medical Director for the Provincial Medical Genetics Program

PRESENTATION: An Overview of NF1 and NF2 Through the Lens of a Geneticist.

Dr. Rebecca Harrison:   Neuro-oncologist, BC Cancer Agency

PRESENTATION: NF1 and Plexiform Neurofibromas

Matt Hay:   Author and Patient Advocate

PRESENTATION: Defining for Myself What I Am Capable of Doing

Frank Buono, PhD:   Research Scientist, Psychiatry, Yale School of Medicine

PRESENTATION: NF and Pain

Jaymee Maaghop:   Health Policy and Outreach Manager, Gastrointestinal Society

PRESENTATION: Amplifying Patient and Caregiver Voices for Meaningful Change

Gilles Atlan:   Vice President, NF2 BioSolutions

PRESENTATION: NF2 Research Update

Kirsten Niedtner & Brendon Pommier:   

PRESENTATION: Beyond Diagnosis: The Human Side of NF

More to Come!

Keep an eye on this page as we continue to update the schedule with additional expert presentations, research breakthroughs, and inspiring stories from the NF community.

OUR 2023 SYMPOSIUM SPEAKERS

Dr. Linlea Armstrong, BSc, MD

Dr. Armstrong is a medical geneticist and currently the medical director for the Provincial Medical Genetics Program. She maintains a general medical genetics practice, with a focus on pediatric tumour and cancer predisposition syndromes. Dr. Armstrong believes that being involved in the care of individuals with neurofibromatosis is always a special privilege, and she has been fortunate to have had the opportunity to work on related research, particularly regarding bone health in NF1. Dr. Armstrong has a passion for medical education and quality improvement, and over time she has served UBC in various capacities, including as director for the Medical Genetics and Genomics Royal College residency program.

Gilles Atlan, BSc, MSc

Gilles is Vice President of NF2 BioSolutions patient-led nonprofit. Gilles has over 30 years of experience in the software industry and currently works for SAP Labs as an Business AI Manager. Gilles’s daughter, Karen, was diagnosed with NF2 at age of 6 due to a juvenile cataract. Today Karen has already undergone 4 surgeries and tried different drugs to control her many tumors. Gilles grew up in France, lived near San Francisco for more than 10 years, and today is based in Israel. He holds a BSc in Mechanical Engineering and an MSc in Computer Science from the University of Manchester. Gilles specializes in innovation methodologies and is applying these skills to grow and develop NF2 BioSolutions (NBS). Gilles strongly believes that novel therapies like cell/gene and immunotherapies are the best hope for a better future for NF2 patients. In 4 years, NF2 BioSolutions jumpstarted and sponsored more than 10 labs in the USA, UK, and France.

Matt Hay

Matt Hay was a college student when diagnosed with a rare disease called Neurofibromatosis Type 2 (NF2) that would require more than 20 surgeries and eventually take his hearing, balance and facial movement.  He turned his decades of struggle into an opportunity to help others live better lives.  Matt is a best-selling author, a congressional lobbyist, a public health doctoral candidate, an Ironman Triathlon and Boston Marathon finisher and serves as the US Director of Advocacy for a rare disease biopharma company,.  He lives in Westfield, Indiana, with his wife (whom he’s quick to point out is the hero of his story) and their three children

Jaymee Maaghop

Jaymee Maaghop is the Health Policy and Outreach Manager for the Gastrointestinal Society. Her focus is on researching and engaging with patients and caregivers living with digestive and liver diseases and disorders, delving into their experiences with access to care, medications, and available resources and services. She is active in providing patient input to several health technology assessment processes on national and provincial levels. She also works closely on several health policy files and has participated in numerous consultations, such as federal pricing regulations, medication supply and shortages, national pharmacare, and more. A graduate of Carleton University with a Bachelor of Arts Honours in Law, Jaymee has dedicated the past six years to advancing patient communities across various therapeutic areas. Her work spans policy analysis, advocacy, medical writing, and strategic communications, reflecting a deep commitment to promote equitable patient engagement in healthcare policy.

Kirsten Niedtner

Kirsten Niedtner, 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. Kirsten serves on the Board of the Tumour Foundation of BC.

Brendon Pommier

Brendon Pommier was diagnosed with NF1 at 3 months old. His experience navigating the challenges associated with NF1 gave Brendon a sense up empathy and care for other’s, leading him to purse a career in the social services. He graduated with a Bachelor of Arts in Child and Youth Care from Douglas College and is currently working as a Youth Worker/Alternative Team Leader working alongside homeless youth living at Covenant House Vancouver. Some of Brendon’s passions include music, the outdoors, and spending time with his family and friends. Brendon’s long-term goal is go eventually go back to school and get a Masters in Counselling where he can use his life experiences living with NF1 to help other’s overcome the various challenges they face.

Dr. Frank Buono

Dr. Frank Buono is an Associate Research Scientist and lecturer in the Department of Psychiatry at Yale School of Medicine, as well as the co-director of the Neurocutaneous Clinic at Yale New Haven Hospital. Dr.Buono's research focuses on the use of digital technologies, such as mobile apps and web-based interventions, to support treatment for individuals with rare diseases, particularly those with limited financial and clinical resources. His work has primarily explored chronic pain in Neurofibromatosis, its effects on quality of life, and alternative approaches to pain management. He has also been diagnosed with NF2-SWN , which gives him a unique perspective during his work, and while working with other doctors and patients.

Dr. Rebecca Harrison

Rebecca Harrison is a medical neuro-oncologist at BC Cancer in Vancouver. Her clinical practice involves caring for patients with brain and other nervous system tumours as well as neurologic complications of cancer. Rebecca is also a board member of the Brain Tumour Foundation of Canada. She believes that the promotion of research and advocacy in neuro-oncology is of great value in improving outcomes for patients and families affected by nervous system tumours.

Top Five Reasons To Attend This Year's Symposium:

1. Access the most current and comprehensive information on neurofibromatosis from esteemed experts.
2. Meet and mingle with families who share your journey, fostering a network of support.
3. Immerse yourself in presentations by seven renowned speakers, each offering a unique perspective.
4. Indulge in a sumptuous catered hot breakfast and lunch, satisfying your taste buds while engaging with others.
5. Elevate your understanding, relationships, and spirits through a day filled with learning and camaraderie.

This year our event will only be presented in a captivating in-person format.

Ticket fees for the symposium help offset the cost of food, AV technology, and CART services (for individuals with hearing impairment).

If the registration fee poses a challenge to your attendance, we encourage you to reach out to our dedicated team at info@tumourfoundation.ca. Limited scholarships are available, specifically designed to assist families facing financial difficulties. Your presence is important to us, and we're here to ensure that everyone can join in this year’s learning opportunity with world-renowned speakers.

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Results of the 2023 NF Symposium

The 2023 NF Symposium

Our 2023 summit has officially wrapped up, and what a fantastic event it was!

Nearly 50 participants from all over Canada gathered to share their stories, soak up new knowledge, and depart with renewed hope, especially after hearing the exciting updates on new research treatments for NF. Heartfelt gratitude to our incredible speakers who journeyed from both the US and Canada to enrich us with their insights at this year’s event. The wealth of wisdom, the connections forged, and the unwavering dedication of our speakers and guests have been nothing short of extraordinary.

Major thanks to Alexion and the Province of BC for making this event possible through their generous funding. Their support underscores the power of partnerships, and we're deeply appreciative of their commitment to advancing NF knowledge, understanding, and treatment.

Coming together, we empower ourselves with knowledge and take significant strides toward a brighter, more informed future, for individuals and families affected by NF. We hope you will join us at the 2024 symposium. Stay tuned for details.