Niagara 5000 to raise awareness and funds for juvenile arthritis charity

When deciding on a charity to support with proceeds from the A & R Solutions Niagara 5000 on August 8 and 9 organizer Alana Hurov didn’t have to look too far.

She chose a charity with which she was very familiar - Cassie and Friends from British Columbia. 

In October 2020, when her family was moving to Niagara-on-the-Lake, Hurov noticed her almost-two-year-old daughter Katherine limping. Her impaired gait continued the next day and the next, which began a series of doctors’ appointments.

The agony continued as it became increasingly more difficult for Katherine to walk or even straighten her leg.

“She was in so much pain,” Hurov remembers. “She would try to stand in her crib and would fall down. We contacted a rheumatologist and he diagnosed her with juvenile idiopathic arthritis (JIA). We didn’t know how serious it would be. It was devastating.”

It’s a story that David Porte and Jennifer Wilson, chair of the board and executive director respectively of Cassie and Friends, are very familiar with. 

Porte’s daughter Cassie was diagnosed with JIA at 20 months old. 

“It started in one knee and spread to 16 joints,” says Porte. “She was my motivation and inspiration to organize a charity run. Through a lot of serendipitous things, family, friends and other people came together and we formed Cassie and Friends. It was a group of dedicated parents who wanted to see change for their children, wanted to fill all the gaps we saw for these kids.”

That was in 2007. At first, it was a small organization focusing on the Vancouver area. Cassie and Friends earned its charitable status in 2011, and Wilson came aboard as executive director five years later. The biggest step came in 2018. 

“We saw that there was a gap across Canada for the things we were offering to improve the lives of kids and families,” explains Porte. “We soon started getting inquiries from families in other parts of Canada. That inspired us to bring our mission across the country.”

Today, Cassie and Friends is a national organization focused on research, education and support for families dealing with pediatric rheumatic diseases. They connect children and their families from coast to coast with healthcare professionals, mainly specialists in JIA from children’s hospitals in their areas. 

Wilson says, “We have this hand-in-hand model, where we work closely with specialty teams which include physicians, nurses, allied health workers and social workers. We help them work with the entire family to create programs to assist them in managing their condition. And we bring the community together to advocate to the government for more research dollars.”

Through their Cassie Cares program, the charity offers free medical equipment and financial aid to families. Cassie and Friends works with the local clinics to ensure that people have the tools, aids and information they need to understand what juvenile arthritis is and how best to support their child. 

Scott and Sonya Galbraith of Burlington became involved with Cassie and Friends when their son Nicholas was diagnosed with JIA at seven months old. Sonya is now the vice chair of the charity’s board of directors. 

“We met Jennifer and David shortly after he was diagnosed,” Scott tells The Local. “We had that feeling of being alone after the diagnosis. Cassie and Friends connected us with people who could understand what we were feeling. They provided a way of achieving understanding and connectedness. They assured us it would all be okay.”

Nicholas, now eight, has had two injections a week for most of his life. Recently, he transitioned to a daily oral dose and one weekly needle. He plays rep hockey and soccer and outran his father in Hamilton’s Around the Bay road race in 2023.

“He walked later than most kids, but he’s busy and active now,” says Scott. “He’s stiff in the mornings sometimes, and when it flares up he doesn’t have the usual range of motion. When he’s feeling good, though, no one would know he has juvenile arthritis.”

Katherine underwent two years of similar treatment before she went into remission. She’s down to a needle once a week. 

“We have this incredible team at McMaster Hospital,” Hurov says. “They’re like family. We have to visit every three months. Arthritis can cause blindness in children, so she needs to have her eyes checked regularly. We don’t know if this will affect her for the rest of her life or if this will go away when she’s a teenager. Without her medication, she would be in a wheelchair.”

As for Cassie, she is now 19 and studying health sciences at Queen’s University in Kingston. Not surprisingly, she hopes to become a doctor. 

“She still has injections every week to control the pain and inflammation,” Porte says. “When we visited her at Queen’s she toured us around the school for about 90 minutes. After that she needed to sit down and rest before we did the next thing. She’s active, but really needs to pay attention to how she feels and take the rests when she needs it.”

“When we started this organization,” adds Porte, “we saw that parents wanted a cure for juvenile arthritis. At the same time, we saw the suffering the kids and families were experiencing. So we decided to work toward finding a cure and also to be there to support kids and families every day.”

“There have been incredible advancements in the medications available to kids with arthritis,” says Wilson. “25 years ago a kid with arthritis might be in a wheelchair or bedridden. Today, they look like any other kid. But with the burden of the disease, the pain and fatigue they deal with, and the aggressiveness of the treatments, parents need the information to understand what the benefits of these treatments are.”

Porte and Wilson will be at the official opening party at Peller Estates Winery on Thursday evening, where they will have a chance to talk about Cassie and Friends. They will also be on Queen Street to welcome kids to a teddy bear medical clinic.  

“We’re also going to have a Cassie and Friends car in the Kids Niagara 5000 (Friday at 9 a.m.),” says Wilson. “I think Katherine will be leading the parade in that.”

And Hurov adds that there will also be a financial benefit to the Canada-wide charity from the A & R Solutions Niagara 5000. 

“We’re going to have a silent auction with a $20,000 garage makeover by Lori Morris design (interior designer of the Scotsman Hotel), a three-hour sailing tour experience and a mini McLaren,” says Hurov, “with all proceeds going to Cassie and Friends.”

“This event is going to make such a difference in Ontario as far as awareness,” adds Wilson. “We’re really thrilled to hopefully connect with more kids and families who might not know about Cassie and Friends yet.”