Just over two years ago, Carion Fenn was involved in a car accident that left her her with several rare conditions such as cigurmilia cure malformation, cervical dystonia and tissue damage.
“I experienced a world that I didn’t know existed,” says Fenn. “I decided to do something about it.”
She wanted to help people like her who need support.
Fenn founded the Carion Fenn Foundation, a non-profit organization that helps people with rare diseases such as syringomyelia, chiari malformation, epilepsy and many more.
The foundation holds a support group meeting every second Thursday at Ajax Public Library, so people can come together and learn new coping mechanisms for pain and feel firsthand what other people are going through on a daily basis.
“We’ve seen over 30 conditions over the last year,” says Fenn. “We see people come as far as five hours away to be a part of our meetings.”
People also have the option to Skype into the meeting and several already do from across the world. “We have people that join us internationally and all around Canada,” says Fenn. “It allows us to support each other no matter where you are.”
Darlene Dawson has attended these meetings for the past four months. They met when Fenn commented on her husband’s walking cane at a local Walmart. Dawson battles fibromyalgia and degenerative arthritis, and deals with chronic pain from a car accident. Her husband, who attends the meetings with her, also deals with daily chronic knee pain from the same accident.
“We found out about the foundation and haven’t missed a meeting since,” says Dawson. “I find it helps because I get to see other people who also live in pain. It’s nice knowing you’re not the only one.”
The support doesn’t stop there. Mental health forums are also offered through the foundation which, according to Fenn, will be registered as a full-time charity soon.
Although Fenn is happy with the progress of her group, she hopes more people realize it’s OK to talk about what they’re going through.
“There’s so many people in our community that are suffering in silence, not going out, not communicating with others. We want them to feel accepted and that you’re not alone,” says Fenn. “It’s important to know what works for you.”
Fenn has won numerous community awards such as the Ajax Civic Award, Patti Dawson Award, Town of Ajax Accessibility Award, and many more.