Calgary Health Foundation

The powerhouse behind CeFfort

The powerhouse behind CeFfortWhen you first meet Nicki Perkins you would never guess that she is sick, let alone has a terminal illness. But the slight woman has Cystic Fibrosis (CF), a genetic disease that fills the lungs with thick mucus, leading to serious respiratory infections and clogs the pancreas, so the body cannot properly digest or absorb food, leading to malnutrition.

Nicki was diagnosed at the age of four. Doctors told her parents she likely wouldn't see five and said they should take her home and give her lots of love. But her family was determined to give her a 'normal' life. But her family was determined to give her a 'normal' life.

It's clear that they more than succeeded and, when Nicki talks about her experiences with the disease, it packs a powerful punch.

"I am a miracle at 41, to not only be alive, but to have my own lungs," says Nicki, "I have a really good quality of life, I can go dancing, do Crossfit ... maybe not for as long as I'd like but I can still do these things."   

To keep the symptoms in check, she takes hundreds of medications, enzymes and vitamins and undergoes rigorous daily physiotherapy. But her deteriorating lungs present the biggest challenge. Unlike most people she has about 37 per cent lung capacity which she compares to a boat with holes in it.

"You have a bucket to bail with at the beginning, but then over time you move to a cup and then to a teaspoon. Research is the key to plugging the holes."

Raising money for CF research is one of Nicki's passions. "I'm motivated to raise money for research because it could save my life, but also because of the impact it will have on generations to come."

In 2005 she created a foundation, CeFfort, to raise money for local research. To date CeFfort has raised more than $650,000; money which is going to better research, better treatments, and hopefully a cure.

She has raised the money through special events including the very popular Lung Function which is heading into its 10th year and, more recently, because she is always looking for a challenge, through Buck Furpees, which challenged Crossfitters pushed to perform as many burpees as they could in seven minutes.

"The idea is to have healthy people know what it's like to struggle to breathe," says Nicki. "and exercise is absolutely a key part of the physio aspect of Cystic Fibrosis. At Crossfit I may do half of the workout that everyone else does but I still do the workout. I am so much stronger than I thought I was. I underestimated myself."

But she couldn't do it alone. Along, with a dedicated board and amazing volunteers she is happy for the assistance of Calgary Health Trust.

"The Trust provides the infrastructure to administrate, advertise and implement a fundraising endeavour as a community event, a partnership event or a marquee event without having to re-invent the wheel. They are an amazing resource for the bake saler, run coordinator or corporate giant," says Nicki.