Author Archives: DHamel

Action Day delegates sent message to MPPs, but dialogue needs to continue

November 5, 2015

By Deron Hamel

TORONTO – Lynn Zeppieri says the greatest success she experienced at this year’s Epilepsy Action Day was helping MPPs and policy makers see the extent to which epilepsy affects Ontarians and helping them understand the need for interventions to minimize the impact of seizure disorders.

Lynn Zeppieri (left), the president of Epilepsy Peterborough and Area’s board, was at Queen’s Park during Epilepsy Action Day with her daughter, Miranda (pictured at right), on Oct. 27. Zeppieri says the greatest success stemming from the event was that it helped MPPs and policy makers see the extent to which epilepsy affects Ontarians.

Zeppieri, the president of Epilepsy Peterborough and Area’s board, was at Queen’s Park during Epilepsy Action Day, an annual advocacy event where representatives from across Ontario convene to mobilize their efforts into meetings with politicians to provide them with a better understanding of the challenges people living with seizure disorders face and to offer solutions to minimize epilepsy’s impact.

There are approximately 90,000 people in Ontario living with epilepsy. About 15,000 of these people are under 17. This statistic opened the eyes of the MPPs and policy makers when they spoke with the approximately 30 delegates attending the Oct. 27 event, Zeppieri says.

“That’s a large number and they were shocked by that,” she told Voices of Epilepsy after the event. “They were shocked by the burden of epilepsy versus the resources available. There’s a huge gap between what’s available and the cost.”

This year’s Epilepsy Action Day had three main points to make to MPPs and policy makers:

– The need for all Ontarians with epilepsy to have access to seizure control
– To ensure adequate funding is available for the next stage of the provincial epilepsy strategy
– To encourage MPPs to support advocacy efforts for students with epilepsy in Ontario schools, which was the main theme behind last year’s Action Day

While Zeppieri says she’s confident delegates got their message through to MPPs and policy makers, she notes that they need to continue the dialogue to ensure the needs of the epilepsy community are kept top of mind.

Delegates now plan to send letters to everyone they met with to thank them for their time. They will also be sending those they met with templates of letters that can be sent to the Ministry of Education and the Ministry of Health and Long-Term Care.

“We have great collaboration that’s happening with both of those ministries – they are working together and we want to make sure that continues, so we hope that they push forward with that collaboration to keep it rolling,” Zeppieri said.

“The goal is that now that we have met with them that we develop a bit of a relationship. Some of our delegates that are here today have been coming here for the last four or five years, so the relationships are developing.”

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Action Day got message across to MPPs that ‘epilepsy matters’: Paul Raymond

October 29, 2015

By Deron Hamel

TORONTO – This year’s Epilepsy Action Day successfully sent a message to Ontario’s MPPs and policy makers that “epilepsy matters and people with epilepsy matter,” says Paul Raymond, Epilepsy Ontario’s executive director.

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.

About 30 people representing epilepsy agencies across Ontario were at Queen’s Park on Oct. 27 for Epilepsy Action Day, an annual advocacy event where the representatives convene to mobilize their efforts into meetings with politicians to provide them with a better understanding of the challenges people living with seizure disorders face and to offer solutions to minimize epilepsy’s impact.

Each Epilepsy Action Day has a different theme but the goal is always the same: educate government officials about the challenges Ontarians living with epilepsy face and encourage them to take action to create policies that improve quality of life for the almost one in 100 people affected by the condition.

This year’s Epilepsy Action Day had three main points to make to MPPs and policy makers:

“The feedback from most of the meetings was positive. Did we accomplish what we wanted? I think we worked towards that,” Raymond told Voices of Epilepsy after the meetings finished.

“It was definitely a step in the right direction. We had a variety of meetings today; some were with MPPs who knew nothing about epilepsy, so this was an opportunity to educate and create awareness.

“We met with other MPPs and it was their fifth or sixth year of meeting with us, so the conversation becomes centred around what’s new, what has the government done and what have we done as Epilepsy Ontario. We have been able to talk about a lot of successes.”

Raymond says what gives him the most hope stemming from the event is that there is now an increased awareness and increased understanding from government that epilepsy is an important issue and that people with epilepsy have stories to tell and need to be heard, he said.

“I think we got that acknowledgement through a lot of these meetings,” he said. “We produced some data and people had no idea that the incidence of epilepsy was that high and that the financial support for epilepsy is that low. We created a couple of really great ‘a-ha’ moments.”

Epilepsy Action Day also helps the epilepsy community hold MPPs accountable. Now that representatives from epilepsy support agencies have met with MPPs they can go back to them and ask for follow-through on promises, Raymond says.

“Now that we’ve had this type of event, we can go back to the MPPs and articulate exactly what we want them to support.”

Action Day 2015 aims to ensure seizure control is available to all Ontarians with epilepsy

October 22, 2015

By Deron Hamel

Representatives from community epilepsy agencies across Ontario will be gathering at Queen’s Park on Oct. 27 to meet with MPPs to underscore the importance of controlling seizures for everyone in the province living with epilepsy.

Epilepsy Action Day is an annual event where the representatives convene at the Ontario legislature to mobilize their efforts into several meetings with MPPs and policy makers to provide them with a better understanding of the challenges people living with seizure disorders face and to offer solutions to minimize epilepsy’s impact.

This year’s Epilepsy Action Day has three main objectives, says Paul Raymond, Epilepsy Ontario’s executive director.

Firstly, agencies are looking for MPPs to support their advocacy efforts to help make the most effective seizure control available to every person in Ontario living with epilepsy. This is the No. 1 objective for agencies at this year’s event, Raymond says.

“We need the Ontario Government’s support to enable individuals with epilepsy to gain greater seizure control, whether it’s access to the best medication, or surgery, or the ketogenic diet, or local support services through agencies,” he says.

Secondly, the agencies want support to ensure adequate funding is available for the next stage of the provincial epilepsy strategy.

The third objective is to encourage MPPs to support advocacy efforts for students with epilepsy in Ontario schools, which was the main theme behind last year’s Action Day.

“The best long-term outcome would be to have additional funds made available so that the epilepsy strategy for Ontario moves into the implementation stage,” Raymond tells Voices of Epilepsy.

“The strategy will help people achieve greater seizure control through it’s recommendations. We need the government’s support to make sure those recommendations get into the hands of the people who will implement them.”

Summerfest Camp hailed as self-confidence booster for children

October 15, 2015

By Deron Hamel

Children attending Summerfest Camp this year had a myriad of experiences, but there is a common narrative emerging from families and the campers themselves: Summerfest is a self-confidence builder.

Philippa Howell says Summerfest Camp has had a positive impact on her 13-year-old daughter, Georgina, in the five years she has attended. Of note, Georgina, who lives with intractable myoclonic epilepsy as well as autism, has especially grown more confident in water, her mother says.

Swimming is one of the many activities children enjoy at Summerfest Camp, and Philippa says Georgina’s confidence in water has skyrocketed.

Philippa saw this first-hand recently when she and her family went to the cabin they’ve stayed at every August for the past nine years. Unlike previous years, Georgina was spending most of her time swimming in the nearby lake.

“Her confidence was, ‘I can swim, and I can do this in open water,’ which is what she does at (Summerfest Camp). She swam distances I could not believe,” Philippa says.

After returning from his first Summerfest Camp last year, nine-year-old Joaquin didn’t say much about his experience. His parents, Natalie and Rafael Alzate, wanted Joaquin to attend camp again this year, so they waited until shortly before he was scheduled to go before telling him.

They were pleasantly surprised with his response.

“The week before camp started we let him know and he was really excited about going – I had not seen a smile on his face that big in a very long time,” Natalie says. “He was excited about being there, and he didn’t even say bye to us, that’s how excited he was about being at camp with the other kids.”

As soon as he returned from Summerfest Camp in July, Joaquin was showing signs that a positive change had occurred. “He was a little more mature and showing more independence,” Natalie says.

For example, Joaquin has been showing leadership in helping to care for his 3-½-year-old brother and baby sister.

“He has really taken on this ‘little daddy’ role with them,” Natalie says. “If he sees his brother doing something that he shouldn’t be doing he is really a lot more in tune with letting us know.

“And he is now trying to face challenges on his own, rather than being hesitant to even try things.”

Fifteen-year-old Isabella has also found Summerfest Camp to be a self-confidence booster. Isabella has enjoyed the experience at Camp Couchiching so much that she plans to return – as a counsellor.

“(That) would be an amazing experience, and I would be able to stay at camp for an entire summer with all the great people there,” Isabella says, who plans to begin a counsellor training program next year.

The fact that Isabella wants to become a Summerfest Camp counsellor is a testament to its value, says her mother, Lisa.

“It’s a great experience – kids have to be responsible for a lot of their own things, and it’s good for their confidence and I think it builds independence,” Lisa says.

Summerfest Camp was founded in 1994 by Anita Allen, a neurology clinic nurse at Toronto’s Hospital for Sick Children (SickKids). The camp enables children aged six to 15, who are living with seizure disorders, to attend camp with other children. Camp Couchiching provides a setting where children can forget about their epilepsy.