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Awareness one of the biggest challenges faced by Cystic Fibrosis Community

"We take what comes as it comes, find a new normal and just keep living our lives."

Waves of people gathered at the North Bay Waterfront Sunday morning to share inspiring stories of courage and spread messages of hope before commencing the fourth annual walk for Cystic Fibrosis.

Pre-walk fundraisers have been happening in and around the city such as cupcakes for cystic fibrosis, cones for a cure, a Zumba dance-a-thon, and a massage-a-thon put on by CrystalRMT, are a reflection of what happens when a community comes together and supports an issue that many families are affected by.

Paige Shemilt has spent three years as chapter president of the North Bay chapter of Cystic Fibrosis Canada and feels a personal connection to the families within the community. “We have a lot of Cystic Fibrosis families for such a small area and were all on the same team, we all want to end CF.” Shemilt stated as she shared the stage with Social Media Manager Macrina Perron.

Perron is no stranger to that struggle being a mother of two children diagnosed with Cystic Fibrosis. She states that keeping a positive attitude is what keeps her going. “We take what comes as it comes, find a new normal and just keep living our lives. Positivity is the key to longevity.” Perron stated, acknowledging that the outpouring of support from the community has been overwhelming as she watched the walk swell from about 50 registered participants the first year to the 200 that registered for the walk Sunday.

Paige also has a personal connection to Cystic Fibrosis, acting as a support for her fiancé Jordan Gardiner, who was diagnosed with Cystic Fibrosis at nine months, after a nurse noticed signs that were indicative of the disease.

Gardiner recently became a paramedic and states that being told that due to his diagnosis he would be unable to pursue his lifelong career goal only acted as a driving force rather than a deterrent.

“I can only prevent it so much but being a paramedic is what I want to do so I’m willing to take that risk; it’s what I’m passionate about.” Gardiner stated as he outlined his daily struggle with Cystic Fibrosis where a significant portion of his day is taking puffers, ventilators, going through various treatments, and having to take up to 40 pills with meals.”

National Manager of donor experience for Cystic Fibrosis Canada Soumidh Mondal attended the event and was happy to see the amount of community support, stating that some of the biggest challenges have been increasing awareness of Cystic Fibrosis as well as gaining provincial funding for health Canada approved medication Orkambi that manages symptoms associated with the disease.

The goal of today’s event was $35,500 and at the last check-in, organizers were halfway there. Funding goes into clinical trials and Cystic Fibrosis research. Seventy-five events like this one were taking place across Canada with an estimation of over $3 million being raised for Cystic Fibrosis.  

Mark French

About the Author: Mark French

Mark French has a passion for both reading and writing and tries to do so every day
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