Dravet.ca Family, Physician and Researcher Conference 2013

This was an excellent conference.
Thank you to so many people who made it possible and who made it so good.

New Residence Hall, McGill University
Montreal, Quebec
Draft Agenda

Friday, June 21, 2013
8:00 Breakfast included
8:30 Final registration and distribution of conference kits
9:00 Introductions, Welcome and Announcements
The Journey Thus Far
9:15 Parent Roundtable Participants introduce themselves and share some of their story
The Sibling PerspectiveAlice Williams
The good and bad. How does it feel, what do you miss, what do you gain, what can parents do?
Ice breakers and Discussion
What can we do?
10:15 Seizure Tracker– Suzanne Nurse will give us a presentation on Seizure Tracker. Guida Clozza will speak to us about Medic Alert, About Kids’ Health, and Lions Foundation of Canada Dog Guides. These are some of the powerful tools we can use when dealing with seizure conditions. What are they? How do we use them?
10:45 Break
Research and Support
11:15 The Internet and Social Media as Sources of Medical Information and Support for Parents: Friend or Foe?Maria Zak
The Internet and social media provide a wealth of information and forums to exchange information and ideas with virtual communities and networks. Many parents of children with chronic conditions turn to the internet and social media for sources of medical information and support. However, is the information they find reliable? Are blogs, personal web pages, YouTube videos, tweets, and forums helpful or do they create confusion and angst for parents and caregivers? This presentation will look at the existing research on parental use of the internet and social media for information and support to answer some of these questions. The audience will be invited to participate and share their views and experiences using the internet and social media. The presentation will conclude with some practical advice on navigating the internet and social medial so that parents and learn to find reliable sources and critically evaluate content they find.
12:00 Literature SearchPatti Bryant
Beyond Consumer Health Information. Your local or hospital library has a wealth of information, just ask the librarian. Lindsay Alcock has done a search of the literature . Patti will present the results and show you how to re-run these searches from your home computer.
12:15 Lunch
2:00 Matthew’s Friends and Dravet Syndrome UKEmma Williams
When you look for support, you find the need and you fill it. The evolution of Matthew’s Friends and Dravet Syndrome UK
2:30 Medical MarijuanaYigal Rifkind – History of medicinal marijuana in Canada, the legal implications, paperwork and filing
3:30 Ketogenic DietEmma Williams
Dispelling myths, the basics of the four diets and how useful they are with Dravet spectrum disorders
4:15 General Meeting
Report of the Chair – past year’s activities
Board Report – current issues
Report of the Vice-Chair – outline of upcoming projects for the next year
Announcement of research partnership
Un-veiling of new website
Volunteers for committees/board/fundraisers
Dravet.ca Family Gathering 2014 – viable if Dravet.org goes ahead?
Dravet.ca Family, Physician and Researcher Conference 2015 – where?
6:00 Dinner – La Citadel 26th floor
Keynote speaker - Farley Flex
Saturday, June 22, 2013
8:30 Breakfast included
9:00 Professional Day registration
9:30 Charlotte DravetPersonal history and development of what was simply a variation of Lennox-
Gastaut Syndrome into Dravet spectrum disorders
10:30 Elizabeth J DonnerSudden Unexpected Death in Epilepsy (SUDEP) is the most devastating outcome of epilepsy. Dr. Donner will review the current state of knowledge of SUDEP, how scientists and doctors are using research to help understand why these deaths occur and the role of SUDEP Aware in promoting this cause.
11:30 Break
12:00 Ingrid Scheffer Vaccination and gait
1:00 Drop by Matthew’s Friends’ table for some special keto treats before heading off to
lunch. Chef Neil will have a number of creations available for you to taste and recipes will be available. He will even show us how to prepare some of them
1:30 Lunch
2:30 Nathaniel Morris - CBD and the American experience, with particular reference to results in Dravet patients
3:30 Danielle AndradeAdult presentation, including seizure control, gait problems and its
correlation with genetic abnormalities
4:15 Panel – Andrade, Dravet and Donner