Author Archives: DHamel

Summerfest Camp registration begins Dec. 4 GIVE YOUR CHILD A SUMMER TO REMEMBER

December 3, 2015

By Deron Hamel

Summerfest Camp is going into its 22nd year in 2016 and families can register their children for a session in this unique, two-week camping experience starting Dec. 4.

Each year Summerfest Camp, which is sponsored by Epilepsy Ontario, has an average of 20 to 40 children and youths who have epilepsy attend the program, where they participate in a wide variety of traditional camping activities.

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, as Epilepsy Ontario describes on its website, “forget about their epilepsy and just be a kid.”

The experience offers children an opportunity to explore their surroundings and discover personal strengths. Some of the activities campers participate in include:

– Water activities: swimming, surfing, canoeing, kayaking
– Land activities: adventure, survival, outdoor living skills, sports
– Arts: arts and crafts, fine arts, performance arts, dance, photography, guitar, journalism

Summerfest Camp also gives families respite. It gives parents a chance to spend time with each other or with their other children. Since the camp has experienced counsellors and offers on-site nursing professionals who are well-versed in working with people who have seizure disorders, parents enjoy peace of mind knowing their children are safe and in good hands.

Summerfest Camp was founded in 1994 by Anita Allen, a neurology clinic nurse at Toronto’s Hospital for Sick Children (SickKids). While she is now retired, Allen is still involved with Summerfest Camp and is working alongside Epilepsy Ontario, Epilepsy Toronto and Camp Couchiching to plan this year’s program.

The 2016 program will offer four, two-week sessions throughout the summer and an additional one-week session called “Intro to Cooch”. This is an introduction to the camp for children who want to try it out before committing to a full two-week session. This one-week experience will be offered in Session 5 only.

The sessions are:

Session 1: July 3-15
Session 2: July 17-29
Session 3: July 31-Aug. 12
Session 4: Aug. 14-26
Session 5: Aug. 28-Sept. 2

Starting Dec. 4, families may register directly with Camp Couchiching at by visiting the camp’s website.

A limited number of sponsorships are available to families in need of financial assistance. The sponsorship request form can be found on Epilepsy Ontario’s website, or by calling Gula Aitkulova to obtain an application at 1-800-463-1119 or 905-474-9696.

Applications are due March 15.

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 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.

Sharing stories of epilepsy helps empower others

November 26, 2015

By Deron Hamel

When people share their stories about living with epilepsy it often inspires others to do the same. This not only helps build a stronger community among those living with epilepsy, but many of these stories also provide hope to those living with seizure disorders.

Steve Rutledge contacted Epilepsy Ontario in February to offer his story about how neurosurgery he had 25 years ago changed his life for the better. Rutledge had lived with epilepsy for 10 years before he had corrective surgery on Sept. 4, 1990. Since then, he has been seizure-free.

Being seizure-free has also encouraged Rutledge to become active in helping people with epilepsy and raising awareness of the condition. He is a volunteer with Epilepsy Peterborough and Area who helps organize events to raise money and, more importantly, he says, raise awareness of epilepsy.

“I am trying to make more people aware of what epilepsy is and how they can help not only themselves but people around them,” he said. “After all the help that I got, I want to give something back.”

Shortly after Epilepsy Ontario published Rutledge’s story on the Voices of Epilepsy news site, Rob Jamieson, a sergeant with the Ontario Provincial Police (OPP), responded in the comment section to share his story about living with epilepsy, saying that “when I read other people’s stories I don’t feel alone and in some ways very fortunate.”

Soon after, Jamieson shared his story with Voices of Epilepsy which acknowledged the support he has received from the OPP and from his fellow officers.

“(Their support) allowed me to continue in a career that I love. It allowed me to retain my dignity, which was integral. It allowed me to lead a team and to give back to the community,” he said.

Do you have a story about living with epilepsy to tell? Have you experienced challenges you have had to overcome? Maybe you are struggling with an issue right now that you would like to share with others. Do you know of an employer or organization that has gone the extra mile in accommodating people living with seizure disorders? How about a teacher that who has worked hard to support a child in the classroom?

Epilepsy Ontario wants to hear your story. Tell us about your family, workplace, school or community experiences. To share your story, please contact the newsroom at 800-294-0051, ext. 23, or by e-mail at deron(at)axiomnews.com.

Epilepsy Ontario participating in Giving Tuesday

November 19, 2015

By Deron Hamel

Epilepsy Ontario is registered for Giving Tuesday, an annual, online charitable event where people can donate to a myriad of not-for-profit organizations that help make a difference in people’s lives.

Giving Tuesday is on Dec. 1.

This is the first year Epilepsy Ontario has participated in Giving Tuesday, a new charitable movement in Canada designed to kick off “opening day of the giving season” and to encourage people to rally behind their favourite causes and share commitments.

The Giving Tuesday website describes the event as “a global day of giving” after Black Friday and Cyber Monday.

“Giving Tuesday is a time to celebrate and encourage activities that support charities and nonprofits,” the site says.

“Whether it’s making a donation, volunteering time, helping a neighbour or spreading the word, Giving Tuesday is a movement for everyone who wants to give something back.”

Epilepsy Ontario is a not-for-profit advocacy organization dedicated to providing counselling, referral services, information and education to help enhance quality of life for people living with seizure disorders.

Money raised from its Giving Tuesday campaign will help Epilepsy Ontario continue to support people and communities through these services.

“With approximately one in every 100 Canadians living with epilepsy, almost everyone has a family member or friend or knows someone who is affected by this disease,” says Kelly Cvijanovich, chair of Epilepsy Ontario’s revenue development committee.

“By donating to Epilepsy Ontario during the Giving Tuesday campaign, you are helping the organization stay true to its mission of promoting independence and optimal quality of life for children and adults living with this disease.” Cvijanovich says.

Additionally, Interac, the Canadian nonprofit interbank network, is matching each donation on Dec. 1 up to $25 that is paid online via Interac cards.

Click here to donate to Epilepsy Ontario on Giving Tuesday.

Epilepsy Action Day has evolved from an advocacy event to a strategic one

November 13, 2015

By Deron Hamel

TORONTO – Epilepsy Action Day has come a long way since 2009, when representatives from Ontario’s epilepsy support agencies began joining advocates from other epilepsy organizations at Queen’s Park to set up information booths, says Paul Raymond.

Representatives from epilepsy support agencies across Ontario were at Queen’s Park on Oct. 27 for Epilepsy Action Day. The event consisted of representatives meeting with MPPs and policy makers to discuss the issues people living with epilepsy face.

Raymond, Epilepsy Ontario’s executive director, notes that during the past five years Epilepsy Action Day has morphed into a strategic event that, along with initiatives from other organizations, has garnered significant results for the epilepsy-awareness movement.

For example, advocacy efforts stemming from a myriad of organizations and events like Epilepsy Action Day played a role in the recognition of a need for more research into neurological conditions. As a result, the province established the Ontario Brain Institute in 2010.

Another major accomplishment that has stemmed from Epilepsy Ontario and other organizations advocating for change in health-related policies was the passing of Ryan’s Law in April. Ryan’s Law guarantees that schoolchildren with asthma can carry inhalers at school in case of an emergency.

The law is named after 12-year-old Ryan Gibbons, who died in October 2012 after suffering a severe asthma attack during recess at school in Straffordville, Ont.

Given asthma’s prevalence in children – the Ontario Lung Association says about 20 per cent of children in the province have the condition – Ryan’s Law addresses key issues to ensure safety in Ontario schools.

But epilepsy is also prevalent in Ontario students, with an estimated 10,000 children and teens across the province living with the condition. Epilepsy Ontario has long taken the stance that children with epilepsy need to be able to have access to rescue medications, should they experience a seizure at school.

Thanks to the efforts of epilepsy-awareness advocates, this issue has been discussed with MPPs and policy makers at the last two Epilepsy Action Days.

Awareness events have also led to the proposed Provincial Strategy for Epilepsy Care, which aims to make epilepsy care centres with state-of-the-art facilities accessible provincewide. A portion of this year’s Epilepsy Action Day was geared towards ensuring adequate funding is available for the next stage of the strategy.

“What’s changed over the years with Epilepsy Action Day is that it is very specific now,” Raymond tells Voices of Epilepsy, when asked about the greatest changes he has seen at the event over the years.

“The messages are very clearly articulated; it’s very deliberate. Lots of time and effort goes into coming up with those messages and presenting them to MPPs. Epilepsy Action Day has evolved into a very strategic event as opposed to just an awareness event.”

About 30 people representing epilepsy agencies across Ontario were at Queen’s Park on Oct. 27 for Epilepsy Action Day 2015.