Moving Beyond the NF Diagnosis

NF Symposium

It’s time for the Annual Symposium on Neurofibromatosis.

February 27, 2016
Hilton Vancouver Airport Hotel
5911 Minoru Boulevard, Richmond, BC

Special Room rate $135
9am-4pm

Tickets only $65
Or stream the event live on your computer or mobile device (fee: $18.63)

The NF Symposium is a patient and family educational event open to all people living with NF and their families, and interested community professionals. Attendees will learn about the latest medical advancements in neurofibromatosis, get practical advice on NF-related issues, and learn about increasing their overall health and life.

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This year’s symposium offers opportunities for individuals and families to connect and learn during the symposium and after at the family social. Our goals for the event are:

  • Provide presentations by prominent NF physicians to discuss the latest diagnostics, clinical trials, and management options, while giving patients the opportunity to discuss questions or concerns.
  • Provide presentations by health and wellness experts to learn more about creating optimal health.
  • Unite patients and families with each other and physicians to hear the message of hope.

Five Reasons You Don’t Want to Miss the NF Symposium on February 27th:

  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.
  2. 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.
  3. 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.
  4. 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!
  5. Wine
    The event will end with a wine and cheese. Did we mention there would be wine at the end of the event? This is a great time to relax and meet new friends!

Here is what your registration includes:

  • Continental breakfast
  • Seven highly informational and engaging guest speakers
  • Lunch
  • Wine and cheese social
  • Networking opportunities
  • Lots of fun!

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DON’T MISS THIS INCREDIBLE EVENT!

Speaker Highlights

Thriving with Neurofibromatosis

Kristi HopkinsKristi Hopkins
NF Mom, Author and Blogger

Kristi Hopkins is a mother of six beautiful children, three of whom share her diagnosis of neurofibromatosis. She is the author of Thriving with Neurofibromatosis, and has been writing a blog of the same name for the last 6 years. Kristi is on a mission to let the world know the truth about NF, and encourage those living with the disorder to make a difference for them self.

Sharing her experiences and memories of her own life, Kristi will take the audience on a journey of how she discovered her own her own moment of truth when she was faced with the reality of NF in her own life and the lives of her children. She has learned that we deserve to do more than survive NF, survive everyday life, but to thrive!

She currently lives in Broomfield, Colorado, dividing her time between a full-time job, shuttling her kids to doctors, taking them to babysitting jobs, the mall, and the movies, and of course, raising her biggest kid of all, her husband Rich!

The Role for Surgery in Patients with Neurofibromatosis

Dr. Doug Courtemanche, MD MS FRCSCDr. Doug Courtemanche
Division of Plastic Surgery
Clinical Professor, Department of Surgery, University of British Columbia

Dr. Courtemanche is a plastic surgeon in Vancouver working at BC Children’s Hospital and at Vancouver General Hospital. His main areas of interest are craniofacial surgery and vascular
anomalies. He also has a long-standing interest in caring for patients with NF, dating back to his days as a student at the UBC medical school. His talk will be based on his experience looking after patients for the past 25 years.

Learn Their Way

Susan SchenkSusan Schenk
Entrepreneur, Occupational Therapist, Speaker, Author & Advocate

In her book, Beyond Ok: From Invisible to Invincible, Susan offers an insider’s look at learning differences as a child, a parent and a professional. After writing her book, she knew the next step was to write the ‘how-to” to help guide and support moms as they empowered their child to see their true learning abilities. She now has a group online program called the Invincible Mama Program which supports moms in various countries. Susan also runs a business called Technology & Tools for Kids where she works directly with a few VIP clients and trains Occupational Therapists across the globe in her iPads at School course. She applies her OT experience along with her understanding of the power of technology to show OTs a new way to integrate technology into every aspect of their support.

Prevalence and Natural History of Gliomas in NF1

Laura SellmerLaura Sellmer

Brain tumours affect about 20% of all children with NF1. These tumours commonly involve the optic nerve (optic gliomas) or can be elsewhere in the brain (non-optic gliomas). They seem to occur at
different frequencies at different ages, and have a different prognosis. Most are diagnosed in children, and the risk for adults to develop brain tumours is currently unknown.

Through a collaboration with Prof. Victor-Felix Mautner from the University Hospital Hamburg, Germany, we were able to obtain the world’s largest collection of whole-body MRIs of NF1 patients. We are analyzing the MRI reports and images to establish the frequency of both types of gliomas in people of different ages. We are planning to further analyze the MRIs to identify risk factors for brain tumour development. These results will enable us to be reassuring to patients in low-risk groups, as well as to identify people who are at higher risk and who might benefit from more frequent screening.

Laura completed her undergraduate degree in Pharmaceutical Sciences at the Ludwig-Maximilians University in Munich, Germany, where she won the annual prize for excellence for her research on an experimental treatment for breast cancer. After an exchange semester at McGill University, she decided to pursue graduate studies in Canada. She is currently working on a Master’s degree in Medical Genetics with Dr. Jan Friedman and is very excited to work in neurofibromatosis 1.

Beyond the Internet: Myths and the Truths of an NF Diagnosis
A Q and A with Canada’s NF Expert

Jan Friedman, MD, PhDDr. Jan Friedman
Professor of Medical Genetics, University of British Columbia

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.

Self Love: The Secret To A Happy Life

Mary EnglishMary English
Writer, Artist, & Teacher

Mary England is a writer, artist, and teacher who is passionate about self love and creativity. She is dedicated to empowering others to unapologetically embrace who they are. You can find her leaving a literal trail of glitter in Baltimore, Maryland. Uncustomary.org

Mary will discuss the importance of self love and how to start your personal journey. She will share actionable ways you can start falling in love with yourself today, build your self esteem, and embrace your unique qualities without hesitation. You can reach Mary at
Uncustomary.org

Neurofibromatosis and Predisposition to Tumors

Dr. Juliette HukinDr. Juliette Hukin
Clinical Associate Professor, Division of Neurology and Oncology in the Department of Paediatrics at the University of British Columbia

Dr. Hukin graduated from Sydney University Medical School and soon after began her pursuit of pediatric training. She completed general pediatric training and pediatric neurology in Vancouver and followed this with a fellowship in pediatric neuro-oncology in New York. She returned to Vancouver in 1998 to join as a faculty member in the divisions of pediatric neurology and oncology, and lead the BC pediatric neuro-oncology program. Her specific interests are in brain tumor management and neurological complications of cancer; neurofibromatosis and associated nervous system tumors; and also acute and chronic general neurological conditions. She is currently president of the Canadian Association of Child Neurology. She was previously on the board for the Canadian Brain Tumor Consortium, the Scientific committees for the Society of Neuro-oncology and International Society of Pediatric Neurooncology, Canadian Neuro-oncology Organisation, various Children Oncology Group committees and I am an active member in the Canadian Pediatric Brain Tumor Consortium.

She has contributed to 55 peer reviewed publications, and contributed to the brain tumor
section of the online educational resource. She is privileged to work with an outstanding team and in particular the patients and their families. She could not do this work without the support of her beloved husband and two adorable daughters.

The Ifs, Ands & Buts – Life with NF2

Simone ConnorSimone Connor
NF Mom & Entrepreneur

Simone is the mother of two sons, one living with NF2. She shares her family’s story and how she took a life of ‘ifs’, ‘ands’ and ‘buts’ from something that is often seen as negative and switched it into something positive. She will share how you can do the same in your life. Simone in an entrepreneur who believes in the power of dreams. She is also the Vancouver Island coordinator of the Make-A-Wish Foundation, BC & Yukon.

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Symposium Agenda

8:30   Registration Opens (Coffee and muffins available)
9:00   Welcome
9:15   Thriving with NF
Kristi Hopkins
10:00   The Role for Surgery in Patients with Neurofibromatosis
Dr. Doug Courtemanche
11:00   Learn Their Way
Susan Schenk
12:00   Buffet Lunch provided
1:00   Prevalence and Natural History of Gliomas in NF1
Laura Sellmer
1:15   Beyond the Internet: Myths and the Truths of an NF Diagnosis
Dr. Jan Friedman
2:00   Self Love: The Secret To A Happy Life
Mary English
3:00   Coffee Break
3:15   Neurofibromatosis and Predisposition to Tumors
Dr. Juliette Hukin
4:15   The Ifs, Ands & Buts – Life with NF2
Simone Conner
5:00   Wrap-up
  Closing followed by wine and cheese reception.

The BCNF reserves the right to make changes to the agenda as required and without notice.

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What last year’s guests are saying:

Speakers were exceptional.

A great source of info!

Enjoyed the wide range of speakers very much. Thank you!

Loved the personal stories.

Just a quick note to let you know how great the event was. All the speakers and information were fantastic. The medical information was good and up to date. Thank you!

Don’t miss this year’s event. We have limited seats available due to the room size and early bird ticket sales ends December 31, 2015.

If you have any questions, concerns or need further assistance please email our Executive Director, Desirée Sher.


Videos from previous years

If you missed the events, or just want to see them again, you can watch videos of the presentations below:


Photos from previous symposia