Author Archives: DHamel

WHO passing epilepsy-care resolution a ‘huge’ step towards closing treatment gap

September 10, 2015

By Deron Hamel

A World Health Organization (WHO) resolution that was unanimously passed earlier this year could create large-scale, positive change in epilepsy treatment across the globe, says Mary Secco, an Ontario advocate for people with epilepsy.

IBE and WHO representatives, pictured left to right: Athanasios Covanis, president IBE; Shekhar Saxena, WHO; Shichuo Li (China); Brooke Short, WHO; Ann Little, executive director IBE (Ireland); Mary Secco, IBE (Canada); Tarun Dua, WHO; Emilio Perucca, president ILAE; Alla Guekht, ILAE (Russia). Photo credit: International Bureau for Epilepsy

Secco, who is co-chair of the International League Against Epilepsy’s (ILAE’s) Global Outreach Task Force as well as a volunteer with a worldwide organization called the International Bureau for Epilepsy (IBE), says with the WHO committing to further epilepsy care and research, the large epilepsy treatment gap in developing countries could be significantly narrowed.

Delegates at the WHO’s general assembly in Geneva, Switzerland, unanimously approved a resolution in May to improve epilepsy care and research around the world.

As an IBE volunteer, Secco met with the Public Health Agency of Canada and Foreign Affairs Canada to encourage support for the resolution. She also addressed delegates from the World Health Assembly’s 194 member states to underscore the importance of the resolution passing.

In her presentations, Secco noted that an estimated 50 million people worldwide are living with epilepsy and that there is a large treatment gap in the condition.

For instance, 75 per cent of people living with epilepsy have never received medication for treatment, despite the fact that epilepsy is treatable and it would cost as little as US$5 per year for medication for some people.

“To me, (the treatment gap) is a huge social injustice,” Secco tells Voices of Epilepsy. “We have strategies for malaria, for polio, we’re putting so much money towards other things, and we have never looked at epilepsy and we could make such a difference by just having it on governments’ radar.”

Momentum supporting the WHO to commit to a focus on epilepsy treatment has been building in the past year. In December, China requested that epilepsy be put on the WHO’s agenda. In February, seven countries formally sponsored the resolution: China, Russia, Maldives, Argentina, Iran, Japan and Panama.

During the May general assembly, 43 nations spoke to support the resolution, with 19 countries – including Canada – co-sponsoring it.

With the passing of the resolution, the WHO is now accountable for ensuring steps are taken to close the treatment gap. At the World Health Assembly in 2018, the WHO will have to demonstrate steps the organization has taken to improve epilepsy care worldwide.

“We’ll see governments putting epilepsy medications in stock; we’ll see countries putting epilepsy training within their health-care system and having a plan to treat people with the condition in their countries,” says Secco, who is travelling to Istanbul, Turkey, this month to attend a conference where she will be training delegates on how they can use the WHO resolution as leverage to improve epilepsy care.

“There are measurable outcomes that the WHO has to bring back to us in 2018. … This is huge for people with epilepsy. It gives us the political will now to work with our governments to see this go into action.”

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.

Golf tournament supporting Summerfest Camp going into its 10th year

August 20, 2015

By Deron Hamel

Ian Richardson says the greatest success stemming from the Richardson Charity Golf Tournament since it began in 2006 is the amount of money the event has raised and the fact that the proceeds have helped send many children and youths to Summerfest Camp.

The Richardson Charity Golf Tournament was launched by Richardson and his family in honour of his father who lived with epilepsy. The tournament, which is being held this year on Aug. 29, has raised about $50,000 in its 10 years.

Once again, all proceeds will go towards funding Summerfest Camp, an annual summer program held at Camp Couchiching near Orillia that’s sponsored by Epilepsy Ontario. The camp helps children and youths living with epilepsy enjoy a summer camp experience with appropriate nursing care.

The tournament is also far-reaching, Richardson notes. He has a relative from the U.S. who plays every year as well as two friends from Belgium who fly to Canada to play in the tournament.

“We have a core group that plays almost every year, and then we have some new faces that come,” Richardson says.

Each year the event aims to raise about $5,000 for Summerfest Camp, and Richardson says he’s hoping this year’s event hits the mark again.

“We’re pretty confident we will be at or around that amount again this year,” Richardson says, adding corporate sponsors also make an important contribution to the tournament.

When the first tournament was held, most participants were the Richardsons’ family members and some close friends. With each tournament came more people; at first friends of friends, then expanding to others. Eventually, corporate sponsors came on board.

This year’s Richardson Family Golf Tournament is being held at Wyldewood Golf and Country Club in Hornby, Ont., near Oakville.

The tournament includes a lunch and prizes will be raffled off as well.

The cost of registration is $120 ($65 for Wyldewood members), which covers green fees, golf carts, lunch and prizes. Tee-off is at 1 p.m.

Click here for more information.

Fundraiser being held to help keep teen seizure-free

August 13, 2015

By Deron Hamel

A fundraiser takes place this weekend in Everett, Ont. to help 18-year-old Jesse Bolton and his family pay for medication to control his epilepsy.

The fundraiser is being hosted by Paul Hibbert and his family. Since 2013, the Hibbert family has hosted an annual fundraiser in memory of their son who was only 26 when he died of sudden unexpected death in epilepsy (SUDEP) three years ago.

Last year’s fundraiser supported their local epilepsy association, Epilepsy Simcoe County.

What’s unique about this year’s event is that it’s being hosted by a family Bolton has never even met – but with whom he shares a common bond.

Hibbert’s son was also named Jesse, and this coincidence is not lost on Bolton.

“I’ve never even met Paul, but he’s hosting a fundraiser for me – I’m very grateful in every single way, but I am a little overwhelmed (by the coincidence) at the same time,” Bolton tells Voices of Epilepsy.

“He is a super generous person to host the fundraiser for me.”

Bolton says Hibbert read an article published in the Alliston Herald in April about his family’s struggle to get the province to cover his prescription for Zonisamide, an anticonvulsant that has helped him remain seizure-free for the past five years.

The family’s application through the Exceptional Access Program (EAP) to have a portion of the medication’s cost paid for was accepted earlier this year, and Bolton receives the medication through the Trillium Drug Program (TDP).

However, Zonisamide costs $6,300 for a year’s supply, and the family is required to pay a $4,000 deductible.

Bolton says no one should have to pay this much for essential medications.

Before 2010, Bolton was living with uncontrolled seizures. He had a temporal lobe resection surgery that March which stopped his seizures. The surgery combined with taking Zonisamide has kept Bolton seizure-free for the past five years.

And his life has changed dramatically for the better.

“(The surgery and medication) has made an absolutely phenomenal difference in my life,” Bolton says. “I was just going into high school at the time (of the surgery), so I couldn’t have imagined doing four years of high school with uncontrolled seizures.”

The fundraiser is being held Saturday, Aug. 15 at the Royal Canadian Legion in Everett. Tickets are $20. Call 705-435-7989 or e-mail [email protected] for more information.

Mom says Summerfest Camp has boosted son’s self-confidence, increased his socialization

August 6, 2015

By Deron Hamel

Natalie Alzate says her nine-year-old son Joaquin has become more self-confident and his communications skills have flourished since he began attending Summerfest Camp in 2014.

Having recently attended Summerfest Camp for the second time, Joaquin continues to show increased socialization and a “can-do attitude,” Natalie tells Voices of Epilepsy.

When Joaquin attended Summerfest Camp last year he was hesitant to go, Natalie says. He had never been away from home by himself and he was nervous about going to the camp, which is held annually at Camp Couchiching, near Orillia.

Now in its 21st year, Summerfest Camp has an average of 20 to 40 children and youths who have epilepsy attend the program; they participate in activities such as swimming, hiking, kayaking and sports. The camp is staffed with people trained in how to work with children living with epilepsy.

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

“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 a few weeks ago, 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 a two-month-old 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.”

Another change Natalie and Rafael have seen in Joaquin is that he has become more inquisitive, sometimes even asking strangers questions.

“He is a lot more interested in asking questions now,” Natalie says.

Natalie says she believes what has made a difference is being at camp with children Joaquin doesn’t see on a regular basis. At school, he is surrounded by the same group of children, but each camping experience introduces him to new people, she says.

“At camp he is almost able to recreate himself,” Natalie 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.

Summerfest Camp is financially supported by Epilepsy Ontario and made possible by fundraising events held throughout the year.