Author Archives: DHamel

Ticket price reduced for 2017 Sail Away cruise in support of Summerfest

May 11, 2017

By Deron Hamel

There’s one more reason to attend this year’s Sail Away cruise to help send children living with epilepsy to Summerfest Camp – a reduced ticket price.

Thanks to support from the annual event’s sponsors, the ticket price for the 2017 Sail Away cruise is $70. The ticket price last year was $85.

Virginia Lackey, Epilepsy Ontario’s treasurer, says the organization is hoping the fourth annual Sail Away cruise will be “bigger and better than ever,” adding she hopes the price reduction, which was made possible by sponsorships, will encourage more people to attend.

“We (also) want to get people out to make them aware of the programs that we offer, make them aware of Epilepsy Ontario and to just have a great night,” she says. “It’s great for people to be aware of what we (Epilepsy Ontario) do and to learn about Summerfest Camp.”

Aside from the Sail Away cruise being an opportunity to support Summerfest Camp, it’s also an entertaining night out on Lake Ontario, Lackey notes.

The cruise raises money each year to help send children living with epilepsy to Summerfest Camp, if their families require financial assistance.

For 23 years, Summerfest Camp has seen an average of 20 to 40 children and youth attend each session, where they participate in activities such as hiking, kayaking and sports at Camp Couchiching, near Orillia.

Summerfest Camp enables children aged six to 15 who are living with seizure disorders to attend camp with other children. The camp provides a setting where children can forget about their epilepsy and enjoy a camping experience with others.

The Sail Away cruise, which includes a buffet dinner, dancing, silent auction, 50-50 draw and door prizes, will coast along Lake Ontario’s shoreline for 3 ½ hours on June 8.

The cruise will set sail from the docks at Mariposa Cruises at 207 Queens Quay West, Toronto, at 6:30 p.m. and return at 10 p.m.

Click here to register for the 2017 Sail Away cruise or to learn more about the event.

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 1-800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com.

Ottawa man proves there’s always hope when you’re living with epilepsy

April 10, 2017

By Deron Hamel

Shaun Kehoe has a message for every person with epilepsy who’s living with uncontrolled seizures: “Don’t let epilepsy beat you. Where there’s a will, there’s a way.”

Shaun Kehoe (right), is seen here with his son, Aaron.

The 34-year-old Ottawa resident knows what he’s talking about. Kehoe struggled with uncontrolled seizures from age 17 to 25.

Having uncontrolled seizures impacted his life and the lives of his family members. Kehoe was having up to 20 seizures a day. This forced him to put his studies on hold. He couldn’t work. He couldn’t pursue his passion for weight-training.

Worst of all for Kehoe, his seizures, which could strike at any time, prevented him from spending time alone with his young son.

“My son was two at the time when I was diagnosed, and when I was diagnosed with epilepsy I was no longer allowed to be alone with him,” he recalls. “That was the thing that hurt the most; that I couldn’t be much of a dad – that’s what it felt like.”

Diagnosed with epilepsy at 19, Kehoe, who had been living on his own, had to move in with his father. His seizures were so severe he couldn’t be left alone and had to be supervised 24/7.

“My dad had to take two years off work on sick leave to watch me,” Kehoe says.

Kehoe’s struggle with epilepsy began at 17 when he had his first seizure. When he was six months old, Kehoe suffered a brain hemorrhage and needed surgery. His seizures were caused by scar tissue left from brain surgeries he had from the time he was a baby until he was 13.

Kehoe had more surgeries after being diagnosed with epilepsy. There were medication regimens. Eventually, doctors found medications that reduced Kehoe’s seizures to about three a day.

Then, when Kehoe was 25, a friend suggested he add omega-3 fish oil tablets to his medication regimen.

“I went a month without a seizure, which, at the time, was completely unheard-of,” he recalls.

But Kehoe started having seizures again in an on-and-off pattern. He began replacing his omega-3 fish oil tablets with an omega-3 fish oil liquid and has not had a seizure since.

That was 8 ½ years ago.

Today, Kehoe works for the federal government. He is an active weight-trainer and weight-lifting competitor. He also volunteers for Epilepsy Ottawa.

“I’ve always dreamt of being a personal trainer and an athlete, and I’m doing it now,” he says. “My life has completely turned around, and I’ve made it my goal in life to help turn other people’s lives around.”

And his message to people with epilepsy is always the same: “Don’t give up; don’t let epilepsy beat you.”

Kehoe adds that today he can spend “all the time in the world” with his son, Aaron, now 17. The pair works out together and they also share a passion for dining out.

Aaron has diabetes. Like his dad, he tries to help others, so the apple didn’t fall far from the tree.

“He helps people (with diabetes), and I help people with epilepsy,” Kehoe says. “We want to give back, because we want to be a motivation for people.”

2 charities partner to create educational sessions focused on Dravet spectrum disorders

March 27, 2017

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.

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 1-800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com.

Epilepsy Ontario engages MPPs and policy makers at Epilepsy Action Day 2017

March 9, 2017

By Deron Hamel

TORONTO – Epilepsy Ontario executive director Paul Raymond says the success of the sixth Epilepsy Action Day at Queen’s Park on Feb. 28 was the overwhelming engagement from MPPs and policy makers had about the agency’s epilepsy care advocacy agenda.

Epilepsy Ontario representatives from across the province are seen here in front of Queen's Park Feb. 28 during Epilepsy Action Day 2017. — Epilepsy Ontario representatives from across the province are seen here in front of Queen’s Park Feb. 28 during Epilepsy Action Day 2017.

MPPs and policy makers offered Epilepsy Ontario suggestions to help move its patient care advocacy goals forward, Raymond adds.

For instance, one of Epilepsy Ontario’s requests was for support of community agencies through a community epilepsy liaison role, something that has been recommended by the ministry-funded Epilepsy Implementation Task Force, but not yet funded.

MPPs gave Epilepsy Ontario “very distinct strategies” on how to move forward by using vehicles such as petitions to help the Ministry of Health and Long-Term Care and health critics understand why there is a need to create the community liaison role.

“We are hopeful that now that we have spoken with the MPPs and staff with the Ministry of Health that the message is really simple: an expert task force, from the Ministry of Health, recommended this role, (so) why haven’t you funded it? The MPPs and their staff were really receptive to this,” Raymond tells Voices of Epilepsy.

Epilepsy Ontario also used Epilepsy Action Day 2017 to celebrate the provincial government’s excellent work helping enhance quality of life for people with seizure disorders, as well as asking for continued funding to support the Ontario Brain Institute’s (OBI’s) research.

“This was also really well-received by the MPPs and their staff because we were community-based advocacy agencies coming in and asking for funding, not for us, but to an already-funded ministry program, because we value the importance of the OBI and EpLink in Ontario,” Raymond says.

EpLink, a provincial epilepsy research program funded by the OBI, is conducting research to find new treatments to stop seizures and new strategies to improve quality of life for people with epilepsy.

Epilepsy Action Day 2017 had widespread representation from across all regions of Ontario, which Raymond says was encouraging to see.

There were six teams of volunteers and staff from Epilepsy Ontario agencies comprised of 20 volunteers from 9 of the 13 community agencies attending the event. Representatives met with more than 40 MPPs and their staff.

Jo-Anne Welton, a woman from North Bay whose son has Dravet syndrome and who is an advocate for people with epilepsy, was a speaker at the reception this year. Welton is also an Epilepsy Ontario volunteer.

The purpose of Epilepsy Action Day is for representatives from Epilepsy Ontario and the community based support agencies to meet with MPPs to discuss the needs of people living with seizure disorders and what role government can play to improve the quality of life for those living with the condition.

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