Valemount Scleroderma Walk in the Park, Saturday June 29, 2019

SCLERODERMA ASSOCIATION OF B.C.

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Valemount Scleroderma Walk in the Park for Research is on Saturday June 29th, 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

A word from Teressa:

Being diagnosed with Scleroderma in 2011, it was very hard to talk about because I didn’t have the answers that people were asking.  After, several years I thought it is time to start talking about  Scleroderma. What better to have a walk, where my family, friends and my wonderful community Valemount can get together. To spread awareness  and find a cure for us fighting Scleroderma. All donations are continued to be directed for research. Please join us by signing up or make a team, or print off a pledge sheet and lets raise some money

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.