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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.

Fundraising Activities:

Dravet Walk for the Kids

Mississauga Marathon

Fight for Kate

Sean’s Hope

Fundraising goals:

Family Support - Having successfully completed our first Family, Physician and Researcher Conference in June 2013, our current goal is the 2014 Family Retreat (September 12-14).

Education -

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”

Please include your mailing address so we can send you a complete receipt.You can mail a cheque, or it is easy to make an interac email transfer to through your regular online banking service
through CanadaHelps,
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Contact us
154 Mount Scio Road
St. John’s, NL, A1B 4E8


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published feb 2013
last edit jan 2017

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