2019 Victoria Scleroderma Walk
SCLERODERMA ASSOCIATION OF B.C.
The 2nd Annual Victoria Scleroderma Walk in the Park for Research is on Sunday June 23rd, 2019.
The Scleroderma Association of B.C. organizes events in June (Scleroderma Awareness Month) across British Columbia to raise awareness for this terrible disease and fundraise for vital research. We need your help to achieve both goals this year.
Awareness – forward this link to family and friends – put up a poster at your work place – talk about this disease.
Fundraise – join a local event – start or join a team – register as an individual – donate.
You may not have heard of Scleroderma. It is a rare chronic autoimmune disease that affects about 2,200 people here in B.C. That is about 1 in 2,500 people; you probably have a connection that you don’t know about. The name scleroderma is derived from the Greek “skleros” meaning hard and “dérma” meaning skin; simply “hard skin”.
Unfortunately, it is not that simple. Scleroderma presents itself differently for everyone and takes a unique course during the development of the disease. The “hard skin” may be visible when the skin is affected or invisible when only internal organs are involved; or a combination of both. Each patient lives with their individual challenges everyday. There is no known cause, it is extremely difficult to diagnose and no cure. To learn more about scleroderma go our website at www.sclerodermabc.ca
The idea for the Victoria Scleroderma Walk came about after Linda Barnes, who has been supported by St. Paul’s Vancouver Scleroderma Clinic, attended ‘Ride for Research’ in Vancouver, in 2017. She decided that patients and their families on Vancouver Island could help spread awareness and fundraise for research. The idea of participating as a community in a healthy activity to raise awareness of this debilitating disease, was the catalyst for the first walk in 2018. Over 100 people participated by walking, sponsoring a walker, donating services and volunteering. Over $12,000 was raised and we hope to continue to grow this year with involvement from other areas of Vancouver Island.
In British Columbia there is little or no government research funding for rare diseases, such as scleroderma. Financially supporting research is primarily patient driven and becomes a success from involvement by people that care and are willing to make a commitment. 100% if every donation during our June events goes to research. Over the last seven years, SABC has provided over $250,000 in funding to research through the Scleroderma Ride for Research and Walks in Victoria, Valemount and Smithers.
SABC supports research in B.C. through the St. Paul’s Foundation, St. Paul's Hospital Scleroderma Clinic and local researchers. The Scleroderma Association of BC Research Project is a proof-of-concept study, to discover miRNA sequences and their differential expression, that is being conducted here in B.C. The team is led by SABC President Rosanne Queen, SABC past President Bob Buzza, Drs. James Dunne and Kevin Keen. The project started in 2017 with the collection of blood and skin tissue samples from patients and friends; we literally “have skin in the game”. The research is continuing with the next steps investigating specific biomarkers and therapies for treatment. Support of other research and applications to improve the quality of life and eventually a cure is being made to The Scleroderma Patient-centered Intervention Network, the Canadian Scleroderma Research Group and The Scleroderma Research Chair of the University of Montreal.