The 2024 leadership summit and symposium has been set for October 4-5th.

More coming soon!

Posting date: November 4, 2023

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.

Below is the original posting of the event details


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The date and location has been set for the 2023 Annual Symposium!

Saturday, October 28th | Hilton Hotel Metrotown, Burnaby

Join us for an immersive and empowering experience at the 2023 Fall Symposium, where families impacted by neurofibromatosis (NF) come together once again!

This year our event will be presented in a captivating in-person format bringing you the warmth of face-to-face connections and the latest insights in the field.

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, effective strategies for alleviating anxiety 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!


Dr. Suganth Suppiah

Dr. Suganth Suppiah received his BSc in neuroscience from McMasterUniversity. He completed his medical school training at Western University and his neurosurgical training at the University of Toronto. During his neurosurgery training, he also completed a PhD in the molecular biology of peripheral nerve sheath tumors. Dr. Suppiah further completed a fellowship in complex peripheral nerve surgery at the University of Calgary. He has started as a surgeon-scientist and assistant professor in neurosurgery at the Toronto Western Hospital, with a special interest in peripheral nerve and spine tumors. He also specializes in surgical management of neurofibromatosis related central and peripheral nervous system tumors. He has been awarded the prestigious Francis S. Collins Scholar in Translational Neurofibromatosis Research to build his research program. Dr. Suppiah’s research focuses on understanding the genomic mechanisms that drive benign and malignant peripheral nerve sheath tumors to uncover novel therapeutic targets.

Katherine McDermott

Katherine McDermott is a postdoctoral fellow in the Center for Health Outcomes and Interdisciplinary Research at Massachusetts General Hospital (MGH)/Harvard Medical School. She completed her PhD in clinical psychology at Florida State University and her pre-doctoral internship at the Minneapolis VA Health Care System. Dr. McDermott’s research focuses on emotional processing in chronic pain and the development of mind-body interventions to reduce pain interference and increase quality of life for individuals with a range of pain and related conditions. Dr. McDermott is passionate about increasing access to care for patients who have historically had limited treatment options, including individuals with rare conditions and those from underserved communities. She has published extensively, is funded by the National Institute on Aging, and was the previous recipient of a National Research Service Award (F31) from the National Institute on Drug Abuse.

Rohita Sharma, PhD

Rohita Sharma, PhD, is a Global Sr. Director in the Patient Insights & Solutions team at Alexion AstraZeneca Rare Disease. In this role, Rohita leads the development and implementation of the LEAP platform across the organization, and geographies to ensure that strategies, tactics, and initiatives are grounded in the patients’ lived experience. Rohita has more than 15 years’ experience in the pharmaceutical industry mainly in medical affairs. She has worked across commercial, medical affairs and corporate functions, both in country and at the global level. She has broad therapeutic area experience including rare diseases, vaccines, respiratory, and diabetes. She has extensive experience in leading and executing strategic medical plans, partnering with key external experts, presenting scientific and clinical data to advisory and HTA bodies as part of pre-launch, launch and life cycle management of medicines. Rohita earned an Honors Bachelor of Science and a Master’s in Science from the University of Toronto and a PhD in Neuroscience from McMaster University. She also completed a one-year post-doctoral fellowship at the Toronto Hospital for Sick Children.

Dr. Christopher Moertel

Dr. Christopher Moertel is the Kenneth and Betty Jayne Dahlberg Professor of Pediatrics in the University of Minnesota School of Medicine. Dr. Moertel is the Medical Director of Neuro-oncology and leads the Comprehensive Neurofibromatosis Clinic. He also serves as Medical Director of The Katie Hageboeck Children’s Cancer Research Fund Clinic. Collaboration with the David Largaespada laboratory has led to important discovery regarding the biology of Schwann cell tumors in NF1, the development of a porcine model of NF1, and drug discovery for the treatment of NF1-associated neoplasms. Dr. Moertel attended medical school at the University of Minnesota, completed his residency in pediatrics at the Baylor College of Medicine in Houston, Texas and attended the Mayo Graduate School of Medicine to complete his Pediatric Hematology/Oncology Fellowship.

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, along with the opportunity to ask questions
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.

If the registration fee poses a challenge to your attendance, we encourage you to reach out to our dedicated team Limited scholarships are available, specifically designed to assist families affected by NF 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.