Canadian NF Symposium

Hélène L. Pérusse
Vice-president ANFQ

Last november, I was privileged to attend the canadian N.F. Symposium entitled "Living with N.F. – Dialogue and Discovery" in Vancouver.

I was all at once very honoured and truly humbled to be finaly able to meet and listen to so many distinguished specialists and doctors who were presenting the results of their research and studies. Whowever received the information we regularly send to you will recognize such names as Doctors, Viskochil, Friedman, Korf, Riccardi, Silva, Sébire, etc. Heartfelt congratulations to BCNF in the organisation of this symposium.

For two days last November (the 15th and 16th) the sixty plus participants were able to learn all about the latest developments in research and discoveries from the mouth of the experts themselves. I must point out those same experts were quite enchanted by the vast knowledge of the participants themselves as demonstrated during the "questions and answers" sessions at the end of each presentation.

They (the experts) were able to see that most of the people who must live with NF as well as their family and friends take a very active part in educating themselves to all new knowledge on the disease and how in turns it can facilitate the day-to-day living of those affected with it.

NF Canadian Symposium

The doctors are : Guillaume Sebire, M.D., Ph.D, Dr. Jan Friedman M.D., PhD., Dr. David Viskochil M.D., Ph.D, Dr. Bruce Korf, M.D. Ph.D, Dr. Vincent Riccardi M.D..

I will attempt to give you a summary of the guest speakers as well as some of the highlights of this symposium.

There is still quite a lot to be learned about this disease even though research has had some quite important breakthrough these last fifteen years.

For example, Dr Alcino Silva Ph.D. a very enthusiastic speaker presented his research which he directed (at the University of Cafifornia Neurology department) on learning disabilities. With mouse models they were able, with experimental drugs, to make signs of learning disabilities disappear. Dr Silva was quick to point out that there is still much to be done before this therapy can be used in clinical "human" trials but it opens the door to the molecular biology of N.F.

Dr Guillaume Sébire (head of pediatric neurology at Sherbrooke hospital) presented us with the results of a research concerning the cerebrovascular manifestations in children with N.F. Even though N.F. is not the main cause of such manifestations in children, the new disgnostic technics allow for much better perspectives as far as therapies in the detection and treatment options of the disease.

Dr Jan Friedman (professor in the genetics department of UBC and director of the International NF database) discussed about the many clinical manifestations and diagnostic criteria of NF as well as the role played by the NF gene in many aspects whether cellular or developmental of the human system.

Dr David Viskochil (professor at the department of Pediatrics at the University of UTAH) spoke to us of the developmental process of NF1 on the molecular level. As an aside, I would like to say here that the non iniated participant (read non-m.d.) should be given an "honorary doctorate" in medicine at such events). The NF gene being so big and the spontaneous mutations so numerous and complex, it is quite nice to see such enthusiasm from all the guest speakers and researchers employed in facilitating a greated understanding of it.

Dr Bruce Korf (prosessor at the University of Alabama) and one of the world authority on NF also talked about NF and cancer. The NF gene being a tumor suppressor gene much research can be done hand in hand alongside that of cancer research. Dr Korf also demonstrated to all the interactive web site: www.understandingnf1.org.

Dr Vincent Riccardi's (of the NF Institute in California) is recognized as a pioneer in NF research and knowledge. His presentation was on "the features, consequences and complications" of NF.

Dr Stephen Treadwell (chief of the Orthopedic dept of the BC Children's Hospital) spoke to us of spinal deformities and collapsing scoliosis. Coping with the psychological impact of NF and pain management strategies by Leona Kuttner (Ph.D.) and Barbara Rosen (Ph. D.) was a very interesting and informative talk.Clinical symptoms associated with malignant peripheral nerve sheath tumors in NF1 was sobering though, just as interesting (Tracy Tucker).

Those two days were amongst the most interesting and instructive days since the diagnosis almost fifteen years ago of my daughter Geneviève, they reaffirmed what I have always thought "knowledge is power".

Once again thank you to BCNF for it's splendid organization; The enchanting decor of British Columbia University was not dampened even by rain, the food was excellent and plentiful and the closing diner with Cynthia Turley's speech were magical; to have been able to speak with the very diverse medical authorities, the participants from other provinces and the board members of the B.C. and Ontario NF associations was a real treat.

To have also been involved during my stay in the "unofficial" launching of NF Canada after all the years of hard work and anticipation will also be an unforgettable experience. Deborah, Mary Jane, Birgit, Inara, Cynthia, thank you for being who you are, wonderful women, warm-hearted wowen, actively engaged women, loving women.

Thank you also to Lise and to ANFQ for allowing me to be part of this Symposium. Allow me one last thought: the dreamer part of myself as well as my enchanted eyes will always remember my dazingly beautiful Canadian flying odyssey. Under a glorious sky which allowed me an uninterrupted view from Montreal to Vancouver of awe-inspiring beauty such as the vast prairies already snow-bound but yet gave a peek of quilted-like fields and the majestic Rockies with their countless peaks.

We live in a vast country yet many of us despite our differences are bound for better or for worse to the cause of neurofibromatosis.

Back