8th Annual Scleroderma Ride for Research
SCLERODERMA ASSOCIATION OF B.C.
The 8th Annual Scleroderma Ride for Research is on Sunday June 16th, 2019. Ready to roll at 9:45 AM from Ceperly Park in Stanley Park.
The Scleroderma Association of B.C. (SABC) 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.
Help us by ….
Forward this link to family and friends – put up a poster at your work place – talk about this disease.
Participating in the Ride/Walk
Everyone has to register, but you have a few options on how to do that:
Create a Team – Click the "Create a Team" button above, to create a Team Page and your own Individual Page as the Team's Captain. Note that as Team Captain you will have the ability to modify the team page with images and a story. You can also invite others to join the team by setting up their own individual page so that all their donations will be counted towards the team's fundraising total!
Join a Team – To join an existing team, go to the “Teams” tab and select the team you wish to join. Once you arrive at the team page, click the "Join Team" button to create your individual page.
Join as an Individual – Click the "Join as an Individual" button above, to create your own individual page.
What is Scleroderma?
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 of which you are not aware. 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 each person 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 or cure, and it is extremely difficult to diagnose. To learn more about scleroderma go to our website at www.sclerodermabc.ca
Why do we ride?
The Scleroderma Ride for Research was an idea that came to me (us) in 2011 on our flight home from a cycle touring trip in Ireland. It was time for us to do something about the disease that been affecting our lives since Rosanne was diagnosed in 1997; what better way than to combine our love of cycling with our desire to make it better for others. We started with family and friends in 2012 and, since then, our “family” has continued to grow to support raising awareness and research funding. Donations continue to be directed toward research and, with the community’s help, we expect to surpass our goal of $40,000. Consider forming or joining a team to come out for the day or donate to make a scleroderma patient’s life better.
How do your donations help research?
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 through involvement of people who care and are willing to make a commitment. 100% of every donation during our June events goes to research. Over the last seven years, SABC has provided over $250,000 in funding toward 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 SABC 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, Dr. James Dunne and Dr. 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 to eventually find 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.