Author Archives: DHamel

I AM 1 in 100 campaign takes off across Canada

March 26, 2020

By Deron Hamel

The seed of the I AM 1 in 100 social media campaign was planted at a brainstorming session at Epilepsy Ottawa in 2019 to raise epilepsy awareness. The idea was put into action, then spread throughout the Ottawa area, was adopted by the Canadian Epilepsy Alliance (CEA) and has now grown across Canada.

Last summer, members of the Epilepsy Ottawa team collaborated to come up with an idea to create an awareness campaign to launch in March 2020 in recognition of Epilepsy Awareness Month that would encourage people to participate.

One suggestion everyone liked – and the idea that would be adopted – was to encourage people living with epilepsy to write short messages about themselves on signs that started with the words “I have epilepsy and …” and then post them on social media, explains Epilepsy Ottawa executive director Nikki Porter.

Because the team wanted to engage as many people as possible, the campaign was fine-tuned to include family members of people with epilepsy who can participate by posting signs on social media that read “Someone I care about has epilepsy and …”.

People can write about anything they wish, from how they are feeling that day to words that describe their character. Some people are even including information about their hobbies or interests, Porter notes.

“Our goal is to demonstrate that people with epilepsy are more than just their seizures,” she tells Voices of Epilepsy. “The I AM 1 in 100 campaign is really about people changing the public perception of what it means to have epilepsy.”

The name of the campaign calls attention to the fact that an estimated one in every 100 Canadians is living with epilepsy. Porter says the name of the campaign, along with the social media hashtag #Iam1in100, reinforces to the public how prevalent epilepsy is in Canada.

Epilepsy Ottawa started the campaign last September. The agency then shared the campaign idea with the CEA. The CEA embraced the campaign and rolled it out nationwide.

“What I love seeing is how enthusiastic people have been to participate,” Porter says. “A lot of people are doing this, and I think it’s a great campaign that individuals can do to show their uniqueness and individuality, while also joining with others across the country to raise the profile of epilepsy and to redefine for the public what that means.”

Click here for more information on the I AM 1 in 100 campaign.

Looking ahead and not dwelling on limitations is key to future, student says

February 27, 2020

By Deron Hamel

Lexi Crowe says she lives her life focusing on looking ahead and not dwelling on things she can’t change, and this outlook is helping her live well while managing her epilepsy.

Lexi Crowe (left) is pictured here receiving her Osler Epilepsy Scholarship from Epilepsy Southwestern Ontario epilepsy educator Sandra Pidduck.

Lexi, who graduated from high school last year, had her first seizure when she was in Grade 1. While her seizures were at first sporadic, they became more frequent as she got older.

She was diagnosed as having atypical absence seizures, which are characterized by the same symptoms as absence seizures, such as staring, but are atypical in the sense that people with the condition may still be able to respond when spoken to, for instance.

In July 2018, Lexi was diagnosed with dyscognitive and bilateral seizures, which resulted in her sometimes losing consciousness. She came to realize that these seizures were brought on when she overexerted herself, mentally or physically.

Lexi has played a variety of sports, including hockey, soccer, tennis and baseball. She can continue to participate; however, she says she has to always be mindful of how much stress she’s putting on herself.

“(While participating in) these sports, I have to make sure I don’t overheat myself and to drink plenty of water,” Lexi says. “If I don’t, it would probably lead to a seizure.

“I love playing sports, but my health has to come first.”

Lexi says she is now focusing on her future, working hard to manage her epilepsy and looking ahead.

“As long as I can live a happy life and manage my epilepsy, I will be thrilled,” she says.

Lexi is one of the recipients of this year’s Osler Epilepsy Scholarship. The $1,500 scholarship, formerly called the OBCL Epilepsy Scholarship, is being offered to six students this year.

Osler Epilepsy Scholarships are awarded each year to exceptional students who have confronted and overcome remarkable barriers in their academic and personal lives due to their epilepsy.

Epilepsy Durham Region donates 1,900 Lora dogs to local first responders

January 27, 2020

By Deron Hamel

Epilepsy Durham Region has provided 1,900 Lora the Lavender Labrador soft plush charity dogs to Durham Region first responders to help build strong connections with local police, fire and ambulance services, as well as to raise epilepsy awareness.

Durham Region first responders are pictured with some of the 1,900 Lora the Lavender Labradors that Epilepsy Durham Region donated on Dec. 17.

The Lora dogs were presented to first responders during a Dec. 17 ceremony at the Region of Durham headquarters in Whitby. Responders will now distribute the soft Lora dogs when tending to people in traumatic situations to help provide a measure of comfort.

Epilepsy Durham Region community outreach associate Chelsea Kerstens says it’s crucial for epilepsy agencies to develop strong relationships with local first responders because police, fire and ambulance services are often the bridge that connects people who have epilepsy and require information or services with epilepsy support agencies.

“The hope is that with the first responders understanding a little bit more about epilepsy and more about the community agencies that are available to clients, they will be able to connect with us quicker and ultimately learn more about living with epilepsy and all the pieces that come along with community epilepsy agencies,” Kerstens tells Voices of Epilepsy.

The Lora dogs were created through Paws for a Cause, a 12-month Epilepsy Durham Region fundraising campaign that was launched in December 2018.

Each Lora the Lavender Labrador has a tag with information about why the charity dogs were created along with contact information to connect people with Epilepsy Durham Region. The dogs also feature an awareness ribbon and the words “epilepsy matters” on one paw.

Kerstens says Epilepsy Durham Region also donated the dogs to help the agency recognize the efforts first responders are putting forth to help people with seizure disorders and others facing emergency situations.

“(The Lora dogs are) also a mechanism for us to say thank you and to recognize their efforts so that they have something that they can give out to provide comfort because that, in turn, provides them with a little bit of comfort as well,” she says.

It hasn’t taken long for the Lora dogs to have an impact. The mother of one boy who recently had a seizure sent an e-mail to Epilepsy Durham Region to thank the agency for the Lora dog her son received from a first responder.

“It was such a scary moment for us and Lora helped settle our babe in a scary situation with a lot of strangers near him. I can’t thank you enough!” she wrote.

Living with epilepsy has inspired Sierra Spence to make a career of helping others

December 9, 2019

By Deron Hamel

Volunteering and giving back to her community has always been important to Sierra Spence, so it’s no surprise she plans to pursue a career helping others once she completes her studies.

Sierra Spence, one of the six recipients of this year’s Osler Epilepsy Scholarship, is seen here holding her award alongside OBCL president Lawton Osler and Epilepsy Ontario executive director Paul Raymond.

Sierra lived with seizures from the time she was 10 months old until December 2016, when she underwent brain surgery which partially removed a rare ganglioglioma tumour.

Since her surgery, Sierra has not had any seizures, but it was her experience of living with epilepsy that inspired her to want to help others, she says.

“My life journey with epilepsy has motivated me to always focus on moving forward and helping others to overcome their challenges,” Sierra says.

To give back to her community, Sierra has volunteered with senior citizens, children with special needs and children with disabilities. Sierra has also volunteered at the Niagara Children’s Centre and with the Brock Niagara Penguins, a swimming and gym program for youths and adults with disabilities.

Sierra has also been active in raising epilepsy awareness and has volunteered at Epilepsy Niagara for several years. She has mentored children living with epilepsy and has participated in fundraising events. In high school, Sierra organized epilepsy awareness events and even shared information about first aid for people with seizure disorders.

“These opportunities to work with, learn from and support members of our community have made me realize how strongly each of us can positively impact the lives of others,” she says.

Sierra is currently enrolled in an educational program to provide supports to children with special needs. Eventually, her goal is to work with children who have special needs, she says.

“My experiences living with epilepsy and working with others have motivated me to continue to be actively involved, show initiative and to see the value in taking a leadership role to influence change and make the world a better place for everyone to live in,” she says.

Sierra is one of the recipients of this year’s Osler Epilepsy Scholarship. The $1,500 scholarship, formerly called the OBCL Epilepsy Scholarship, is being offered to six students this year.

Osler Epilepsy Scholarships are awarded each year to exceptional students who have confronted and overcome remarkable barriers in their academic and personal lives due to their epilepsy.

As part of this year’s application process, students submitted a 600- to 900-word essay focused on how they could see themselves helping an epilepsy association or another charitable organization in the future, based on their personal experiences.