Cycle for Olly to raise SUDEP awareness

July 18, 2013

For Deb Fawcett, a special moment will happen on July 28. After bicycling more than 500 kilometres, she will complete the six-day Cycle for Olly that will take her and three other cyclists from Montreal to Toronto to raise awareness about sudden unexpected death in epilepsy (SUDEP).

Last year’s Cycle for Olly bike-riders, from left to right, Paul Jeffs, Deb Fawcett, David Himsworth and Brian Kennedy.
Last year’s Cycle for Olly bike-riders, from left to right, Paul Jeffs, Deb Fawcett, David Himsworth and Brian Kennedy.

Her 15-year-old daughter, Jordan, passed away from SUDEP in 2010, and it’s for Jordan and other people living with epilepsy that she’s cycling in the event.

“When I cross that finish line, I’m doing it for Jordan,” Fawcett says. “That’s what makes me want to do it. It helps me to share her awesomeness by, hopefully, giving life to others who live with epilepsy, because with more awareness there will be more knowledge and understanding and, hopefully, more research.”

Tamzin Jeffs will be cheering on the bike-riders during the second Cycle for Olly, which is named in honour of Jeffs’ sister, Olivia Mullin, who passed away at age 31 as a result of SUDEP in 2007.

Jeffs is co-founder of SUDEP Aware, an organization dedicated to raising awareness and understanding of SUDEP, an unexpected and unexplained death occurring in people with epilepsy.

Jeffs and her father, Paul, started the Cycle for Olly in 2012 to honour Olivia on the fifth anniversary of her passing. As with last year’s event, Paul will be travelling from his home in Serbia to be one of the four cyclists.

While donations for SUDEP Aware will be accepted during the Cycle for Olly, the main objective of the event is to raise awareness of SUDEP and educate people, say Jeffs and Fawcett.

Both say there is not enough understanding in the public about what SUDEP is, its prevalence, and what measures people can take to avoid SUDEP.

“Hopefully, (as a result of the event) more people will know about SUDEP and start talking about it,” Jeffs says.

With a rate of approximately one death in 1,000 people affected by epilepsy per year, SUDEP is more common than many perceive. When the rate of SUDEP is calculated to include only people with uncontrolled epilepsy, or seizures not regulated with medication, the number spikes to about one in 100. SUDEP can be related or unrelated to a seizure.

The four riders will be joined by a support team of 11 people, four of whom are travelling from the U.K. and one from France, to cheer them on. Two epilepsy agencies, Epilepsy Kingston and Epilepsy Durham Region, will host meet-and-greet events as the riders and support team pass through their areas.

The 2013 Cycle for Olly is happening July 23-28.

Writer: Deron Hamel

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