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Racing to a Pain-Free Future for Kids with Arthritis
Racing to a Pain-Free Future for Kids with Arthritis
When David Porte’s daughter, Cassie, was first diagnosed with Juvenile Arthritis (JA) just before her second birthday, he felt confused (could kids even get arthritis?), alone, and fearful for her future. He soon learned that JA affects more than 24,000 children in Canada, causing painful/swollen joints, rash, fevers, and even blindness—and yet, it is poorly resourced and little understood. Wanting to get involved, he signed up for a local charity run in Vancouver, and the rest is history.
Fifteen years later, Cassie + Friends (C+F) is the largest and only charity in Canada that works exclusively on behalf of affected youth and their families. “Our mission,” says Porte, who also serves as C+F’s Board Chair, “is to transform kids’ lives because that’s what is needed—a total transformation when it comes to awareness, treatment options, school support, pain management, and most crucially, a cure.”
To make that happen, C+F recently launched a campaign
to raise $500,000 for the newly formed Cassie + Friends Care and Research Network (CREW). This campaign aims to rapidly advance JA research and make sure kids can access the best possible care and treatments, no matter where they live in Canada. This March, CREW is set to award its first $150,000
in grants thanks to the support of youth, families, healthcare professionals and dedicated community partners, including Nicola Wealth, BMO, Trillium Projects, Keystone Environmental, Westland Insurance, the Y.P. Heung Foundation and the Arthritis Society.
March also marks Juvenile Arthritis Awareness Month and Porte’s 15th year running with Team Cassie + Friends, now 300+ runners strong, with events in Vancouver, Calgary, Edmonton, Ottawa, London, Hamilton, Toronto, and Halifax. “In 2007, when I first started this race, it was still common to see children in wheelchairs or permanently disabled due to their arthritis,” Porte shares. “Since then, new treatments have drastically changed their outcomes, but the reality is that most kids, up to 65 percent, will spend their lifetime in pain due to arthritis and taking aggressive medications that come with their own difficult side effects.”
At just 16 years old, Cassie is now on her fifth medication for her arthritis, which painfully affects her wrists and ankles, after other treatments failed to control her symptoms. In order to keep up at school and as a competitive dancer, she takes a weekly injection of methotrexate (a low-dose form of chemotherapy) and a
bi-weekly injection of Tocilizumab. When needed, Cassie also takes steroid drops for inflammation in her eyes.
Porte says he can’t wait to see what the next 15 years will bring for kids with arthritis, including Cassie, and won’t stop running until kids get the pain-free futures they deserve. “We’ve got world-leading specialists and researchers right here in Canada and some really passionate youth and parent advocates leading the charge. All we need now is for anyone who’s seen, heard, or experienced the damage JA can do on a growing child’s body and mental health to step up and help us do better for kids.”
To join an in-person or virtual Team Cassie + Friends Run/ Walk or make a donation in support of CREW, please visit cassieandfriends.ca. If you or a loved one has been impacted by Juvenile Arthritis or another childhood rheumatic disease, we hope you will share your experience on social media using #15YearsFromNow.
DAVID AND CASSIE © THIS IS IT STUDIOS, ISABELLA SARMIENTO
Kids aren’t just small adults with arthritis.
Learn more and donate at cassieandfriends.ca
