Volunteers sought for a positive cystic fibrosis campaign

Campus Local News

What: Shinerama Shine Day 2012
Where: Meet at the UVSS Student Union Building
When: 9:00 a.m.– 1:30p.m.
How much: Free (Breakfast and lunch included)

When was the last time you treated yourself to a shoeshine? How about a personal serenade? A piggyback? An improvised dance routine?

Saturday, Sept. 8th, is the day to indulge. Thousands of students across Canada will take to the streets and flex their creative muscles in an attempt to raise donations to combat cystic fibrosis (CF) — the most common fatal genetic disease in the country. The event, known as Shinerama, is the largest student-run fundraiser in Canada. In 2011 alone, Shinerama raised a record-breaking $1,116,840.

Cystic fibrosis, which gets its name from scarring and cyst formation in the pancreas, is caused by a mutation in the cystic fibrosis transmembrane conductance regulator gene. This gene — CFTR for short — is responsible for regulating components of sweat, digestive juices and mucus within the body. The most serious symptoms include difficulty breathing, chronic lung infection and life-altering exhaustion. The illness has been described as drowning within your own body.

Lilia Zaharieva, a UVic philosophy alumnus who currently works with B.C.’s Representative for Children and Youth, has been involved with UVic’s Shinerama club for three years. She also has cystic fibrosis, a diagnosis she received in 1989, the same year that scientists discovered the genetic origins of the disease. She was two years old.

“I thought that all kids took 40 pills per day,” says Zaharieva, who only realized the implications of her disease nearly a decade later. “I thought that all kids went to the doctor and did these crazy pulmonary function tests. To me that was just childhood.”

Zaharieva was alone in the library working on a Grade 5 research project when she read that the average life expectancy of someone with cystic fibrosis was 32. “And so I had my first brush with mortality,” says Zaharieva. “It was terrifying.”

In 1961, when Shinerama began, a child diagnosed with CF was expected to die in early infancy. Today, the average person living with CF in Canada lives well into their late 40s.

“Right now, [cystic fibrosis] is really difficult for me in countless ways every single day,” says Zaharieva. “But they’ve made it into more of a huge pain in the ass than a death sentence. And I am so hopeful looking forward.”

Zaharieva got introduced to Shinerama through another young adult with cystic fibrosis. Zaharieva was walking through downtown Victoria when she ran into a curtain of orange and blue balloons.

An athletic looking young man approached her and asked, “Do you know anything about cystic fibrosis?” The man, Mike Hamilton, now graduated from UVic’s chemistry program, introduced Zaharieva to one of the campaign organizers, Naomi Roome.

“I knew that it wouldn’t be another sob-fest fundraiser,” says Zaharieva, who was coming to terms with the severity of her disease following a longer-than-average term of hospital visits. “I could talk about CF with a little bit of humour and a light heart. And what I got in return was feeling very supported by the community.”

This positive approach to a heavy message has been instrumental to the Shinerama movement’s success. Goofy fundraising tactics draw many new student volunteers out each year. Many of the volunteers hope to make friends while familiarizing themselves with a new city. Shinerama volunteers emphasize education over shock-value statistics when canvassing for donations — an approach that’s yielded generous returns.

Zaharieva is particularly sensitive to other, more pessimistic campaigns. “As someone with CF, I find them incredibly demoralizing. There’s one ad with a little boy and he’s downing. Every time I see it, a part of me dies.”

Zaharieva says that these advertisements can be beneficial to some who would otherwise only see her as a healthy young woman (who can out-lift some of her male friends, pound for pound), but believes these over-simplifications can often do more damage than good.

“I don’t see [cystic fibrosis] as a lost cause,” says Zaharieva. “I see young lives who should be helped to reach their potential.”

<i>Shine Day 2012 runs from 9:30 a.m. – 1:30 p.m. Volunteer sign-in is 9 a.m. at the UVSS Student Union Building. Breakfast and Lunch is included. All proceeds go toward Cystic Fibrosis Canada.</i>