Group aims to educate

ROSANNE QUEEN STARTS TO BREAK DOWN.

Overwhelmed by the strong show of support she's received in the lead-up to an inaugural fundraiser in support of scleroderma research, she couldn't be happier.

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A volunteer with the Scleroderma Association of B.C., and a scleroderma patient herself, the North Vancouver resident has organized the Scleroderma Ride for Research, intended to raise awareness of the disorder, as well as funds for the B.C. Scleroderma Clinic and Research Centre at St. Paul's Hospital in Vancouver, one of only two facilities of its kind in Canada and the sole facility in the West.

Queen discussed with her husband, David, what her goal should be and they agreed that $5,000 would be their dream total. With the event a week away, set for June 16 (timed with Scleroderma Awareness Month), in Stanley Park, Queen's total sits at $7,000.

"We're really pleased. The ride for me has gone beyond my expectations," she says.

Small steps are what the grassroots Scleroderma Association of B.C. has long relied on, founded in 1984 by five people diagnosed with the autoimmune disease. Today, the group remains dedicated to its mission of serving scleroderma patients and represents more than 400 people. Activities include increasing public and medical professional awareness of the disorder, as well as raising funds for research, specifically through the clinic at St. Paul's. The non-profit, dependent on volunteers, also played a major role in the official launch of the Scleroderma Society of Canada in 2000.

A major challenge continually faced by those involved with the association is just how few people are aware of

SCLERODERMA Association of B.C. volunteers Tom Mueller and Rosanne Queen invite the public to support the inaugural Scleroderma Ride for Research June 16. scleroderma, a chronic connective tissue disease consisting of abnormal fibrotic processes that can affect multiple organ systems, including the skin, kidneys, heart, lungs and gastrointestinal tract. It can cause immune dysfunction and vascular injury and results in the hardening of the skin and or internal organs. It's estimated that 40,000 Canadians have scleroderma and women are more likely to be diagnosed with it, typically between the ages of 30 and 50.

Association members hope by heightening awareness of scleroderma, they'll be able to better support those affected and help them receive earlier diagnoses and better care, as well as provide needed resources to researchers working to find a cure.

Queen views the upcoming bike ride as yet another important step in their efforts and hopes it becomes an annual event that continues to gain momentum.

"I hope to keep this going for as long as I can pedal," she says.

Education is the key, says Queen, 54. In 1992, she was diagnosed with Raynaud's, a related condition characterized by frequent spasms of the small arteries induced by cold and emotion, apparent in colour changes in the fingers and toes. Her diagnosis with scleroderma came five years later.

"We're just trying to reach out to anybody and everybody," says board member Tom Mueller, a fellow North Vancouver resident. Mueller, 68, was diagnosed with scleroderma seven years ago, though he believes he's had undiagnosed Raynaud's since his late teens.

Scleroderma has greatly impacted their lives, for example, it's affected their mobility and limited their activity levels, Queen's fingertips have hardened and are cold to the touch, her face has altered slightly, the result of the tightening of the skin, she has difficulty swallowing and experiences acid reflux and joint pain. However, both Mueller and Queen assert the importance of staying positive and are happy to give back through the association in any way they can.

"You learn how to live with what you have. You can feel sorry for yourself and say, 'Oh my God, why me?' Or you can take the positive aspect of it and say to yourself, 'This could be a whole lot worse,'" says Mueller.

While next weekend's Scleroderma Ride For Research is open to association members, friends, family and St. Paul's medical staff only, donations are welcome. Queen will cycle 30 kilometres on a tandem bike with her husband, and others will cycle 10 and five km based on their abilities. The event will be followed by the association's annual general meeting and a picnic.

Scleroderma Association of B.C. representatives are gearing up for another fundraiser, the fourth Grandma's Gala, in Vancouver Sept. 9, and will host the eighth annual Canadian Scleroderma Research Group and the Scleroderma Society of Canada's conference and annual general meeting in Burnaby, Sept. 28-30. For more information on scleroderma, the Scleroderma Ride For Research and the Scleroderma Association of B.C., visit www.sclerodermabc.ca.

emcphee@nsnews.com

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