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|Charitable Registration # 850807843RR0001
In support of our purposes (listed on our main page), we are planning a number of projects. To support these projects, we have planned a number of fundraising events.Most of our funding comes from personal donations. We receive no funding from advertising. Biocodex has assisted us with our conference.
Dravet Walk for the Kids
Fight for Kate
Family Support - Having successfully completed our first Family, Physician and Researcher Conference in June 2013, our current goal is the 2014 Dravet.ca Family Retreat (September 12-14).
We are partnering a National Grand Rounds in Diagnosing Rare Epilepsies Series in Canada
This will also produce a patient app and a clinician app.
(i) to increase awareness of these conditions among health care
(ii) provide current information on diagnosis, treatment and management in both pediatric and adult populations.
Research - To date, we have disbursed $212,500 to Canadian research.
$10,000 towards Dr. David Hampson – Development of Gene Therapy for Autism Spectrum and other Neurodevelopmental Disorders – continuation funding for previous project entitled “A pilot study of gene therapy in a mouse model of Dravet syndrome”
$35,000 towards Dr. Danielle Andrade and her team studying “Long-term outcomes in Dravet Syndrome”
$20,000 towards Dr. Peter Ruben and his team studying “Triggers for Dravet-Associated Seizures”
$10,000 towards Dr. Abby Collier and her team studying “Interactions between SCN1a and UGT variants affecting lamotrigine efficacy and toxicity in children with Dravet’s Syndrome”
$12,500 towards Drs. Pierre Drapeau, Eric Samarut and their team using zebrafish to characterize the phenotype of novel DS-causing genes and to screen for potent small molecules that could rescue their DS-like condition
$50,000 towards Dr. Dave Dyment and his team working to identify the potential therapies for the Dravet gene in your family
$20,000 towards Dr. Elizabeth Donner and her team for their project entitled “A Case-control Study of SUDEP in Dravet Spectrum Disorders Une étude cas-témoin de la SUDEP chez les personnes atteintes de troubles du spectre de Dravet”
$20,000 towards Dr. David Hampson and his team for their project entitled “A Pilot Study of Gene Therapy in a Mouse Model of Dravet Syndrome”
$35,000 towards Dr. J. C. Martin del Campo and his team for their project entitled “High CBD Low THC Cannabis Sativa Extract from genetically selected Cannabis sativa as Add-on Treatment for Drug Resistant Epilepsies”
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154 Mount Scio Road
St. John’s, NL, A1B 4E8
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published feb 2013
last edit jan 2017