Shinerama 2015 executive committee (L-R): Ashlee Matkin, Kelly Ma, Alex Dowhanik, Kieran Purich, Lucy Chen, Courtney Boyer and Laura Soong
Imagine taking pills by the dozen every day, knowing that each one plays an intricate role in balancing your health.
While unimaginable for most, it's the reality for many patients living with cystic fibrosis (CF). According to Cystic Fibrosis Canada, one in 3,600 Canadian children are born with the disease, making it the most common fatal genetic disease in Canadian children and youth.
Enter Shinerama, the annual nation-wide fundraiser in support of Cystic Fibrosis Canada. On September 5, students from the University of Alberta will be scattered throughout Edmonton lending a hand, playing a song and much more in exchange for donations toward their $3,000 goal.
"We will have various teams down Whyte Avenue and we'll also be down Jasper," says Lucy Chen, a second-year medical student and co-director of Shinerama at the University of Alberta. "We'll be at a number of places around the city, hopefully places that are transit friendly."
This year, volunteers will be treated to a special reminder of why this fundraiser is so important. Nicole Stringer, a 23 year-old living with cystic fibrosis, will be flying out from West Kelowna, B.C., to address the volunteers before they begin their fundraising marathon. "When I was born in 1992, doctors told my parents I would live until I was 18," she says of her diagnosis. "How is that fair to tell these new parents that their child is going to live to 18 when they can't even imagine what's going to happen in the next 10 years in the medical community?"
Stringer was diagnosed at two years-old, following more than 18 months of testing. She's the first person in her family to receive the diagnosis: her parents weren't even aware they carried the gene until her test reults came back positive. According to her physicians, Stringer's case is relatively mild and she says that much of her complications are centred in her digestive system. She takes at least 70 pills every day, many of which are pancreatic enzymes to help her digestive system. "My pancreas is basically there for looks now," she jokes.
Laura Soong, public relations and media led for Shinerama and second-year medical student, was inspired to get involved after watching videos on the Cystic Fibrosis Canada Facebook page. "With pharmacy being my background, I was listening to this patient who was taking nearly 40 pills a day. It struck me, and I just thought that even if we could narrow that down to 20, that would change their lives so much," she says.
This inspiration led Soong and Chen to concoct the SHINE Challenge, a social media video challenge that asks participants to share a video or picture of themselves doing something that makes them shine, then challenge two of their friends to do the same. Stringer appears near the end of the video, saying that doing the things she loves-like photography-helps her shine through the numerous surgeries, appointments and challenges presented by cystic fibrosis.
"[Stringer] doesn't allow her disease to define her or bring her down. I thought it was a really touching story when she sent it to me and I was really happy to include it in the video," Soong says. "If [the challenge] catches on, I think people could really start to understand more of what Shinerama is and what CF is."
"Once you hear the stories from people who are living with cystic fibrosis, you get inspired to really help out," adds Chen. "I think anything we can do to help is really worthwhile."
Want to learn more about Shinerama? Volunteer today or donate now.