Author Archives: DHamel

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.

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Summerfest camper enjoys experience so much she wants to become a camp counsellor

October 8, 2015

By Deron Hamel

Isabella has attended Summerfest Camp since she was nine. Now 15, Isabella attended her last Summerfest Camp experience this past summer, but she has plans to continue her relationship with the camp, which provides a variety of outdoor experiences for children and youths with epilepsy.

Knowing the difference the camp makes to children living with epilepsy, Isabella, a Grade 10 student, is applying for Summerfest Camp’s two-year leadership development program (LDP) program next year.

By participating in the LDP, Isabella says her goal is to eventually become a Summerfest Camp 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.

“Many counsellors have told me that their best years at camp were while they were in the LDP program, and I would love to become a part of that.”

Summerfest Camp just completed its 21st season. An average of 20 to 40 children and youths living with epilepsy attend the program each summer. Campers participate in activities such as swimming, hiking, kayaking and sports.

The camp, located near Orillia at Camp Couchiching, is staffed with people trained in how to work with children living with epilepsy.

Asked about her favourite aspects of Summerfest Camp, Isabella says it’s the people – both counsellors and campers – and the many activities offered at Camp Couchiching, especially swimming.

“I also learned how to kayak and canoe,” she says.

Isabella also wrote a letter to Epilepsy Ontario in July to thank the organization, which financially supports Summerfest Camp, for the five summers she has spent at Camp Couchiching.

“Camp Couchiching is a place that has taught me so much, not only outdoor skills, but skills I can use every day such as independence, self-confidence and to interact well with others,” Isabella says in her letter.

Isabella’s mother, Lisa, says she has seen the positive impact Summerfest Camp has had on her daughter.

“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.

The fact that Isabella wants to become a Summerfest Camp counsellor is a testament to its value.

“That’s how much it has been a positive experience for her,” she says.

Mother credits Summerfest Camp for daughter’s enhanced confidence and independence

October 1, 2015

By Deron Hamel

Enhanced confidence, independence and making friends – these are the main benefits Philippa Howell says her daughter, Georgina, has garnered since she started attending Summerfest Camp five years ago.

Philippa Howell says her daughter, Georgina, pictured above, has experienced a spike in her self-confidence and independence since she began attending Summerfest Camp five years ago.

Georgina, 13, is living with intractable myoclonic epilepsy as well as autism. She has been attending the camp since she was eight. In that time, Philippa says her daughter has flourished in many ways, and she largely attributes this to Georgina’s Summerfest Camp experiences.

Held near Orillia at Camp Couchiching (affectionately called “Camp Cooch”) every summer, Summerfest Camp enables children aged six to 15 who are living with seizure disorders to attend camp with other children. The camp has the resources to meet the needs of children living with epilepsy and provides a setting where they can enjoy a carefree camping experience.

Now in its 21st year, Summerfest Camp has an average of 20 to 40 children and youths who have epilepsy attend the program. Children participate in activities such as swimming, hiking, kayaking and sports.

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

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

Georgina has also made many friends from across Ontario during her stays at Summerfest Camp, Philippa says.

“These friendships stay at camp. They all wait 11 months and two weeks before seeing each other again, and they all become friends again. Friendship is definitely one of the positives from it,” she says.

Georgina’s positive experience at Summerfest Camp has provided her the confidence to attend another camp this year, “which is amazing,” Philippa says.

“She only went for a week, and when I went to pick her up, she did not want to be picked up,” Philippa says. “She had made some friends, and they were all there when I was picking her up to say goodbye.”

It was Summerfest Camp that provided Georgina with the confidence and enhanced sense of independence to attend a second camp, Philippa says.

“We never would have been able to do this if we hadn’t had the support of Summerfest to (create a) camping experience for her,” Philippa says, adding she and her husband are hoping Georgina can go for four weeks next year.

2,000% price hike on infantile spasms medication ‘predatory behaviour’: Neurologist

September 24, 2015

By Deron Hamel

A 2,000-per-cent price hike on a medication to treat infantile spasms is “predatory behaviour” on the part of Questcor Pharmaceuticals, and drug companies could hike prices on other seizure medications if policies aren’t put into place, says pediatric neurologist Dr. Carter Snead.

Infantile spasms – also called West syndrome – is a catastrophic seizure disorder found in infants, usually four to eight months old, that is characterized by spasms, an interictal electroencephalogram (EEG) pattern called hypsarrhythmia, and intellectual disability.

The most effective treatment for infantile spasms is Synacthen Depot (Cosyntropin), a synthetic form of the pituitary hormone known as adrenocorticotropic hormone (ACTH). Without prompt and effective treatment, an infant will develop severe neurological and cognitive impairments.

In February 2015, Questcor Pharmaceuticals, which has acquired the rights to market Synacthen Depot, raised its price from $35.66 to $801.19 per vial. The cost of the required six-week treatment skyrocketed from about $750 to almost $17,000.

Toronto’s Hospital for Sick Children and the Ontario Drug Benefit (ODB) program negotiated the price down to $680 per vial. The price tag for a treatment course will run $14,280.

The exorbitant price increase bears weight on the public health system, says Snead, an expert in the treatment of infantile spasms.

“They (Questcor) have done absolutely nothing to justify this huge price increase,” Snead says. “There has been no investment in research (and) no investment in drug development. This is completely ugly pricing behaviour.”

In June 2014 Questcor acquired the rights to Synacthen distributed in Canada and Europe. Questcor had previously acquired distribution rights in the U.S. for a natural ACTH product, H.P. Acthar Gel, and raised the price of the medication from about $50 per vial to $28,000 per vial.

Snead says this is an example of price gouging on the part of pharmaceutical companies and fears things could get worse.

“My concern is that this is a harbinger of things that will come in the near future,” Snead says. “This is predatory behaviour on the part of drug companies – period.

“This won’t be the last time this happens. Canada, the United States and Europe need to put some kind of system in place so manufacturers of drugs … have to follow strict regulations following price increases, and the increases cannot exceed the consumer price index.”

In March, one month after the price hike, Snead formally complained to the Patented Medicine Prices Review Board (PMPRB) in Ottawa, asking for the matter to be corrected. He also mobilized the Canadian League Against Epilepsy and the Canadian Child Neurology Society to follow suit.

The effort was all for naught, Snead says.

“It turns out that if the drug is no longer under patent protection, then pricing doesn’t fall within (the PMPRB) jurisdiction,” Snead says. “Once again, the (drug companies) are getting away with murder, and it seems that nothing legally can be done about it.”

The issue of price gouging by pharmaceutical companies received worldwide attention this week when it was announced that a U.S.-based pharmaceutical company raised the price of Daraprim, a medication to treat the parasitic infection toxoplasmosis, which is often found in people affected by HIV and cancer, by a whopping 5,000 per cent.

After a global flurry of anger and criticism was directed at Turing Pharmaceuticals’ CEO Martin Shkreli on social media, the company announced it would lower the price.

“I wouldn’t be surprised if he (Shkreli) looked at the experience Questcor had and said, ‘Hey, this is a strategy to make a lot of money,’” Snead says.