A grassroots group of parents of children living with Dravet syndrome is working to form a Canadian branch of Dravet.org, a U.S.-based global collaboration of parents and medical experts dedicated to improving treatments for children with Dravet syndrome spectrum disorders and empowering families to cope with challenges.
The parents, most of whom live in the Ottawa region, met through a Facebook group and decided to band together to figure out ways to deliver important information to other parents of children with Dravet syndrome, says Dawn Bellefeuille, one of the parents serving on the project’s board.
Bellefeuille says she found it challenging to obtain information about resources and treatments for Canadian children with Dravet syndrome, also known as severe myoclonic epilepsy of infancy (SMEI), a rare form of intractable epilepsy beginning in early childhood.
A large part of the challenge obtaining information stems from the fact that Dravet syndrome is not well known, says Bellefeuille, adding the parents are hoping the site will raise awareness.
This information shortage resulted in long hours spent searching online for ways to help her eight-year-old son, Sean, she adds. Through the creation of Dravet.ca, an idea initiated by board member Patti Thistle, parents of children with Dravet syndrome will have a one-stop portal where they can find the information they need.
Once fully operational, the parents serving on the Dravet.ca board as its directors will be in contact with hospitals, clinics and service providers across Canada to obtain up-to-date information that can be shared online.
“It (won’t) matter where in Canada you are, you’ll have a starting point to go to,” says Bellefeuille.
At the moment, the board of parents involved with the project is working on a letter of intent for a strategic partner with Dravet.org, explains Bellefeuille. Through the proposed partnership, Dravet.ca, the site the board will be launching, will include information from Dravet.org, and vice versa.
Bellefeuille says the best result the Dravet.ca website could achieve in the long-run would be for Dravet.ca to foster research initiatives in Canada.
“Five years down the road, it would be really great to have Canadian researchers involved with Dravet syndrome trying to find a cure the same way that the Americans are doing,” says Bellefeuille.
Additionally, the board is organizing a walk in support of Dravet research on Sept. 29 in Constance Bay in Ottawa’s west end. All money raised from the event will go to Dravet.org. More information about the walk, including how to make a donation, can be found by clicking here.
Once Dravet.ca is established, the group plans to make the walk an annual event that will raise funds for Canadian Dravet syndrome research.
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Writer: Deron Hamel
