NF Symposium


It’s time for our annual conference on neurofibromatosis.

Join us to learn & connect with others!

Each year the Tumour Foundation of BC hosts an educational symposium for patients and their families. This one-day event features a variety of speakers including doctors, researchers, counselors, and patients sharing information on neurofibromatosis.

Guests will learn about the latest medical advancements, receive practical advice on NF-related issues and learn about improving their overall health and life.

Date: Saturday, May 6, 2017

Time: 9:00-4:30pm
Location: Vancouver Airport Hilton Hotel
Address: 5911 Minoru Blvd, Richmond, BC
Special room rate for symposium guests $179. Book Online Here!
Tickets:  $65


We are still working on the agenda but potential topics include: Overview of NF1/NF2; Pain Management; Current Research Update; School; and more!

Here is what your ticket price includes:
  • A continental breakfast
  • Seven highly informational and engaging guest speakers
  • A delicious catered lunch
  • Wine and cheese social
  • Networking opportunities

Take a look at what last year’s guests  said about the event
(and we didn’t make this up!)

“Out of 10, I give your event an 11!”
“All the speakers and information were fantastic.”
“The medical information was good and up-to-date.”
“A great source of info!”
“Enjoyed the wide range of speakers very much.”
“Loved the personal stories.”

Still not sure about participating? Here are 5 more reasons you want to attend:

  1. You will gain knowledge that will last a lifetime

No matter how much you know about NF there is always more to learn, and the more you know, the better decisions you can make for your long-term health.

  1. Connect with Real People

In our busy world we often forget the importance and the value of being in a face-to-face setting with others. While social media can help keep us connected, there is real power in meeting others who are walking a similar journey. Lifelong friendships and connections have evolved from the annual symposium.

  1. The Price is Right!

Our event is very affordable. For a small fee you get expert advice and the ability to communicate and interact with some big name people, along with a delicious lunch, all for a fraction of what it really costs.

  1. Have Fun

All work and no play can make for a dull life. Never underestimate the power of a little fun and education mixed with some interesting people!

  1. Wine

The event will end with a wine and cheese social. Did we mention there would be wine at the end of the event? This is a great time to relax and meet new friends!  

Register Today!

Living an Empowered Life

Join the Annual Symposium of the Tumour Foundation of BC
Education, Connection & Fun Agenda to March 20th
Saturday, May 6th, 2017
Hilton Vancouver Airport Hotel - 5911 Minoru Blvd, Richmond
8:30am Registration Opens (Coffee and muffins available)
9:00 Welcome & Opening Remarks
Desiree Sher, Executive Director
9:30 Living Courageously with Neurofibromatosis
Courtney Willoughby, Registered nurse, advocate and writer
10:00 Battling Neurofibromatosis: Past, Present, Future
Dr. Saber Ghadakzadeh
11:00 Mindfulness & Wellness Research: A Survivors Perspective
Ben Diplock, Clinical Researcher and Paediatric Brain Tumour Survivor
12:00 Buffet Lunch provided
1:00 What’s New in NF1 Research
Dr. Jan Friedman, Professor of Medical Genetics, University of British Columbia
2:00 Keeping Your Relationship Strong when your Child or Partner has a Chronic Health Condition
Nicole Haley, Relationship Coach
2:30 Coffee Break
2:45 Wholehearted Living with a Health Condition
Karen Gilbert, Occupational Therapist & Certified Daring Way™ Facilitator
3:45 A Parent's Perspective to Participating in a Clinical Trial
Kelly Carpenter
4:15 Closing
4:30 Wine and cheese reception
The Tumour Foundation of BC reserves the right to make changes to the agenda as required and without notice.


Courtney Willoughby

Living Courageously with Neurofibromatosis

Courtney is one of the founding board members of the Alberta Tumour Foundation, a registered nurse and a strong advocate for people living with Neurofibromatosis. Courtney was diagnosed with NF at the age of 3, and has worked hard to advocate and promote awareness for NF. She has had numerous health issues, and has struggled with mental illness, but is keen to share her story about overcoming insurmountable odds and about embracing the power of vulnerability.

Dr. Saber Ghadakzadeh

Battling Neurofibromatosis: Past, Present, Future

Dr. Ghadakzadeh will be covering a variety of research perspectives including his PhD research on bone regeneration in the patient with NF. Dr. Saber Ghadakzadeh received his MD from Iran in 2008 and on top of his experience with patients, was involved in several clinical research projects with outstanding results and publications. He moved to Canada in late 2010 as a recipient of a University of Toronto’s graduate scholarship to pursue a Master’s degree at Institute of Medical Science (IMS) and initiated a novel basic science research project focused on improving impaired bone repair in neurofibromatosis type 1 (NF1) at SickKids Hospital. Working in Dr. Benjamin Alman’s lab, he discovered an impaired signaling pathway responsible for the defective bone repair in NF1. Utilizing advanced cellular and molecular methods, as well as bone regeneration animal models of NF1, he was able to suggest a solution to a better fracture repair and bone regeneration by modulating that specific signaling pathway. The results of his research in this area has been published in the prestigious FASEB Journal.

Ben Diplock, Clinical Researcher and Paediatric Brain Tumour Survivor

Mindfulness & Wellness Research: A Survivors Perspective

Discussion will focus on the current state of wellness research, with a concentration on the recent increase of interest in mindfulness-based therapies. Ben will share his personal experiences, and research insights around improving wellness and coping. Ben Diplock, BSc is a clinical researcher at Sunnybrook Research Institute and Clinical-Developmental Psychology Graduate Student at York University in Toronto, Ontario. His research focuses on wellness promotion, and integration of mindfulness-based interventions into clinical contexts. As a paediatric brain tumour survivor, Ben has a particular interest in improving the long-term wellness of brain tumour survivors. He is currently investigating the impact of a mindfulness based therapy on mood, function, and quality of life in brain tumour survivors. Ben’s future plans are to provide and study evidence-based, cost-effective, psychotherapeutic treatments that can improve the quality of life for a variety of patient populations, experiencing mood and anxiety disorders.

Jan Friedman, MD, PhD, Professor of Medical Genetics, University of British Columbia

What’s New in NF1 Research?

Dr. Jan Friedman is a clinical geneticist and Professor of Medical Genetics at the University of British Columbia (UBC). He received his MD degree from Tulane University in New Orleans and his PhD in Genetics from the University of Washington (UW) in Seattle. He completed a pediatrics residency at the Children’s Memorial Hospital in Chicago and a clinical fellowship in medical genetics at UW. Dr. Friedman has been involved in clinical and epidemiological research regarding neurofibromatosis for more than 20 years. His research has led to seminal advances in improving the diagnosis of NF, and in formulating recommendations for genetic and clinical diagnosis that have led to enhanced standards of patient care. His key research discoveries of novel molecular and cellular hallmarks that distinguish types of NF, benign tumours that typically arise in these patients, are providing new insights into the pathogenesis and progression of NF. Dr Friedman has published more than 250 peer-reviewed papers and has written six books and edited two others. Over the past 10 years, he has given more than 60 invited presentations.

Nicole Haley, Relationship Coach

Keeping Your Relationship Strong when Your Child or Spouse has a Chronic Health Condition

Creating and sustaining an authentic love with your partner is a daily practice, yet when dealing with an ill child or spouse it can seem overwhelming. Our relationship tends to take the back burner, and can suffer as result. In this session you will discover simple ways to spark the connection with your partner that will bring your closer together and learn practical ways to communicate your needs that inspires action. Nicole Haley, Relationship Coach and founder of Nicole Talks Love, helps men and women unlock their heart and create lasting authentic love. She has over ten years of teaching and coaching experiences, and through seminars and signature coaching programs, Nicole educates men and women how better understand the opposite sex but more importantly themselves, so they can ultimately attract the relationship they want and experience authentic love. Nicole was recently featured on Global BC Morning News and on CKNW the Sex Show.

Karen Gilbert, OT

Wholehearted Living with a Health Condition

An introduction to living a wholehearted life with a health condition, based on Brené Brown’s research on vulnerability, worthiness, shame and courage. Our vulnerabilities can be a doorway to courage, compassion and connection. This session will explore how understanding and cultivating shame resilience can help us to better navigate struggle and show up more fully in our lives. Karen is an Occupational Therapist and Certified Daring Way™ Facilitator. She supports individuals with ongoing health conditions to develop strategies and habits to live life with greater ease and more meaning. She has been an OT for 22 years with a focus on out-patient care and self-management for adults and older adults. Karen is passionate about the interplay between our physical, cognitive, emotional, and social well-being and empowering people with health conditions to maintain a sense of worth and identity during vulnerable times.

Kelly Carpenter

Clinical Trial Participation: Things to Consider From One Family's Experience

Kelly Carpenter, her husband Scott, and their 3 sons (Nolan, Barrett, and Travis) moved to Salt Lake City 6 years ago to be closer to Travis’ medical teams for his NF1 care. Travis (9), diagnosed with NF1 as an infant, enrolled in his 3rd clinical trial in November 2015. Kelly champions the efforts to #EndNF through volunteering with the Children’s Tumor Foundation. Kelly volunteers weekly at the NF Clinic in Utah; helps coordinate the Utah NF Walk, Utah NF Symposium, and other CTF events in Utah. Kelly and family are actively involved in sports, especially racing and hockey in addition to managing Travis’ medical appointments and care. Kelly earned her Meteorology degree at Texas A&M University and proceeded to earn a Masters Degree in Atmospheric Science at Colorado State University with an emphasis in tropical meteorology and satellite imagery.