By Deron Hamel
Dravet Canada and SUDEP Aware have partnered to deliver a series of educational sessions led by researchers and clinicians to provide the latest information about Dravet spectrum disorders to families and caregivers of people living with the condition.
The first Dravet Day events are being held April 8 in Toronto and St. John’s. Organizers are planning to provide more sessions across Canada.
Dravet Days has two objectives: to share the most current information about Dravet, a rare and severe form of epilepsy with frequent, prolonged, drug-resistant seizures, and to provide networking opportunities.
The sessions will include information about Dravet, updates on latest research and ways to help improve quality of life for people living with Dravet.
Dravet Canada is a support network for families, friends and caregivers of people living with Dravet. SUDEP Aware works to reduce death in epilepsy through supporting research and raising awareness of sudden unexpected death in epilepsy (SUDEP).
“We have partnered with SUDEP Aware because of the prevalence of SUDEP in people with Dravet,” Guida Quaglia Clozza, Dravet Canada’s co-chair and co-founder, tells Voices of Epilepsy.
“It’s a day to get together families that are living with Dravet, but also we wanted to include in the target audience medical professionals, nurses, researchers, school personnel, therapists, respite workers, community agencies and anyone else involved with individuals living with Dravet.”
Tamzin Jeffs, co-founder of SUDEP Aware, says the two charities also wanted to work together because, “it makes sense for two small charities to pool their resources to have this day.”
She adds: “(Dravet Days will also provide) valuable information to the Dravet community; it’s also an important networking opportunity between families, doctors and researchers, as well as local advocacy agencies and other exhibitor organizations who will be attending.”
Clozza estimates there are 125 to 150 Canadian families who are supporting loved ones with Dravet. She and Jeffs hope to reach as many of these families as possible.
“It’s tough to bring everybody together because Canada is so vast. So hopefully, if this Dravet Day is successful, we can take this across the country to reach more families and share local information about Dravet and SUDEP,” Clozza says.
The Toronto Dravet Day conference will be held April 8 at Toronto’s Hospital for Sick Children (SickKids) from 9 a.m. to 5 p.m. The deadline for registration is April 5. Click here for more information about registration and the Dravet Days’ sessions.
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