Saturday, October 26, 2019

Take Control of Your NF at the 2019 Symposium

Each year at the annual symposium we bring together NF experts  locally and from around the world to share with families current information on NF, including how to manage the symptoms of NF, and updates on treatment strategies. Participants also have the opportunity to ask questions and connect with other families on the NF journey from across the country. Meals are provided along with lots of social time and fun!

Join us to learn the latest developments & connect with others!

Date: Saturday, October 26, 2019

Time: 7:30am - 5:00pm
Location: Holiday Inn Riverport Hotel
Address: 10688 No. 6 Road , Richmond, BC
Book Online Here!


$65 $17

  • Hot buffet breakfast
  • Ten highly informational & engaging presenters
  • A delicious catered "Birds of Feather luncheon"
  • Networking opportunities
  • A link to the replay of the event
  • Plus, some surprises!

  • Your online pass to view the symposium from start to finish
  • Opportunities to engage with the presenters and hear the answers to your questions in real-time
  • link to view the replay of the event in case you are busy and can’t view the live event.



Agenda 2019

Hosted by the Tumour Foundation of BC
Education, Connection & Fun!
Saturday, October 26th, 2019
Holiday Inn Riverport Hotel - 10688 No. 6 Road, Richmond, BC
Registration Opens
Hot Buffet Breakfast Available
9:00 Opening Remarks
Steve Billington, President
Desirée Sher, Executive Director
9:15 When Cupid Strikes
Gail Appelgren & Tim Golumbia
9:45 Genotype/Phenotype in NF
Dr. Jan Friedman
10:45 Personal Story of Transformation
Frankie Edroff
11:00 Contraception, Reproductive Opt ions and Pregnancy in NF1
Dr. M. Daniela D'Agostino, Dr. June Ortenberg & Ms Stephanie Fox
12:00 “Birds of a Feather’ Luncheon
1:30 AGM
1:45 Parents Fighting Back to Find a NF2 Cure
Lisa Lewis
2:00 Employment Challenges and Solutions When Living with NF
Annette Burrows
3:00 Refreshment Break
3:15 The Empowered Patient- Navigating the Medical Maze
Connie Jvorsik
4:00 Parenting a Child with NF1: Challenges and Triumphs
Sarah Black
Closing Remarks
The Tumour Foundation of BC reserves the right to make changes to the agenda as required and without notice.


Gail Appelgren & Tim Golumbia
When Cupid Strikes

Tim Golumbia and Gail Appelgren do not let NF define their lives. In their presentation they will share how they live a fulfilling and happy life in spite of both being affected with NF1. Tim and Gail live in Alberta with their two dogs. They both volunteer on the board of the Alberta Tumour Foundation.

Jan Friedman, MD, PhD
Genotype/Phenotype in NF

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 almost forty 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 275 peer-reviewed papers and has written six books, and edited two others.

Frankie Edroff
Frankie Edroff

Frankie has many lessons to share from his journey living with NF1, being a multi million-dollar fundraiser, and having the courage to prioritize his mental health even when it could have meant risking it all. Frankie will share how he stays strong and hopeful despite new health challenges.

Dr. M. Daniela D'Agostino, Dr. June Ortenberg, MD, Ms. Stephanie Fox, M.Sc. & Ms. Darya Naumova, M.Sc.
Contraception, Reproductive Options and Pregnancy in NF1

Neurofibromatosis type 1(NF1) the most common hereditary multi-systemic tumor predisposing syndrome. Patients with NF1 require life-long, pro-active clinical monitoring. Each child of an individual with NF1 has a 50% chance of inheriting the disease. As such, a diagnosis of NF1 has a tremendous impact on the psychosocial well-being and reproductive decisions of patients. In this presentation we’ll explore the following NF1-related aspects: fertility, indication and safety of contraception, availability, limitations and outcome of reproductive options including prenatal diagnosis and preimplantation genetic diagnosis and the implications of a diagnosis of NF1 for pregnancy management and outcome.

Dr. D’Agostino completed her Medical Genetics training at McGill University and a Neurogenetics fellowship at Université de Montréal. Since 2015 she is affiliated with the Medical Genetics Division of the McGill University Health Center (MUHC). In 2016 she established the MUHC Adult NF1 Clinic. She also contributes to the Pediatric component of the Clinic. Dr. D’Agostino has contributed to international studies to clarify the genotype/phenotype correlation in NF1. She is currently leading a collaborative study on the psychiatric manifestations of adults with NF1, which has received funding and was endorsed by the Association de la Neurofibromatose du Québec (ANFQ).

Lisa Lewis
Parents Fighting Back to Find a NF2 Cure:
NF2 BioSolutions & Accelerating NF2 Gene Therapy Research

Lisa will share an overview of NF2 Biosolutions’ mission and scientific team; introduce what gene therapy is and report on their latest research strategies with three top US gene therapy labs. Lisa will also share why she chooses to volunteer as an ambassador for this organization, and why she will never give up fighting for a gene therapy cure.

Lisa is a full-time working parent of two beautiful children. Originally from the UK, Lisa and her family emigrated to Canada nine years ago to enjoy the outdoor living that BC has to offer. When she is not working or volunteering for various non-profit charities, Lisa enjoys yoga, hiking, music and spending time with her family in the North Shore mountains.

Annette Burrows
Employment Challenges and Solutions When Living with NF

Finding and keeping employment when you’re living with a chronic disorder isn’t always easy. Annette will help us find solutions and update us on the changes to the Canada Labour Code and what this means for the NF community.

Annette Borrows has been serving people with disabilities towards employment for the past 20 years and all of her efforts are focused towards employment equity for people with disabilities. Annette is an international speaker and the President of the Canadian Association for Supported Employment. She has also written and facilitates over 250 hours of workshops and courses focused on employment equity strategies for serving people with diversities.

Muskaan Sachdeva
Neurofibromatosis Type I: Skin Symptoms, Mental Health and Barriers to Surgery

Muskaan is a second year medical student at University of Toronto, and is also a graduate of the BHSc program at McMaster University. She is an avid supporter of mental health initiatives and is extremely interested in the field of psychodermatology: the connection between the mind and the skin. Through initiating and leading the Neurofibromatosis project, she aspires to understand the cutaneous manifestations of the condition and their effect on the patients’ mental health. Moreover, Muskaan understands the importance of a powerful narrative and wishes to feature the untold stories of those affected by NF Type I through a book and a video. It is her vision that the information collected will improve awareness about the various challenges associated with skin symptoms of NF1 and alleviate the burden of surgery costs.

Connie Jvorsik
The Empowered Patient- Navigating the Medical Maze

Empowered patients know that they are responsible for their own health, health decisions, and will assertively demand the health care they deserve. Connie will share steps on how we can ensure the best outcomes for our health. Connie Jorsvik is the owner and senior healthcare navigator of Patient Pathways (, who helps patients and families with serious and complex illness navigate our fragmented and siloed healthcare system.  She was for 25 years and was always an advocate for her patients.  She and her team now serve Metro Vancouver and the Okanagan. Connie speaks on Advance Care Planning and Empowered Patients, Empowered Caregivers, locally, provincially and nationally.

Sarah Black
Parenting a Child with NF1: Challenges and Triumphs

Sarah is a mom of three children, one of who is living with NF1. Sarah has faced many hardships and wins while learning how to work with the health and educational systems. She will share some of her experiences and what she has learned on her continuing journey with her daughter.

Live Your Best Life with NF!

Empowering yourself with knowledge about neurofibromatosis (NF) puts you in back in control of your health. Learn from both NF clinicians and patients living with the disorder at our 2019 symposium.

This fun and informative event is offered only once a year. This year we have speakers presenting on the following topics:

  • Genoytpe and Phenotype Correlations in NF1
  • Pregnancy and Reproductive Options
  • Accelerating a Gene Therapy Cure for NF2
  • Employment Challenges & Solutions
  • Empowered Patients-Navigating the Medical Maze
  • A Resiliency Formula
  • Personal stories, and much more!

Your ticket includes:

  • Hot buffet breakfast
  • Ten highly informational & engaging presenters from across Canada
  • A delicious catered 'Birds of a Feather' luncheon.
  • Networking opportunities
  • Plus, some cool surprises

Here’s what last year's guests said about the event:


“So impressed with the quality of speakers. Two thumbs up.”

"This event gave our family much needed hope!"

“What an incredible day. We learned so much and met some really lovely people.”



We hope you will join us for this year's event.

Early bird tickets are $50 to September 30th. Regular price $65.

Early bird tickets are available here:    SYMPOSIUM TICKETS



A full listing of speakers will be published later this summer.

Can’t make the in-person event? Join us via the Live Stream.


Thank you to our sponsors and supporters of the 2018 Symposium:

We acknowledge the financial assistance of:

The Province of British Columbia


Check back soon for registration and agenda details.