1st BC Virtual Walk/Ride, Scleroderma Awareness Month - June, 2020
SCLERODERMA ASSOCIATION OF B.C.
100% OF THE FUNDS RAISED WILL GO TO RESEARCH IN CANADA
Show your support by donating to our first ever virtual event: Move for Scleroderma during the entire month of June completing on Monday, June 29th, 2020, World Scleroderma Day!
To DONATE select the Donate Now button at the top of the page.
You will be able to donate to any of the Regional Teams listed below.
What is a virtual event?
Virtual events are an opportunity to participate and connect with others over a shared cause without having to be in the same location. Simply donate online, engage in an activity of your choice, and capture it. Using social distancing, go for a walk, bike ride, run, hold a virtual family activity or do some relaxed stretching at home. Your options are endless, and the choice is yours to be as energetic, adventurous or creative as you want to be.
The fun continues afterwards when we share how we participated, so make sure to take pictures or videos and send them to us via Email. Include your location and any other details you would like to provide. Scleroderma Association of B.C. will create a slideshow including your “movement” to demonstrate how we all came together in the month of June to raise awareness and funds to support scleroderma research. We also encourage you to share your participation through facebook (don’t forget to tag us: Scleroderma Association of B.C.).
Communities throughout BC will have scleroderma representatives along with family, friends and community members who make this special event happen. We welcome you to participate wherever you are!
What is scleroderma?
You may not have heard of scleroderma. It is a rare chronic autoimmune disease that affects about 2,300 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
In British Columbia there is little or no government research funding for orphan 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 eight years, SABC has provided over $360,000 in funding to research through the Vancouver Scleroderma Ride for Research and Walks in Victoria, Valemount and Smithers.
100% of funds raised support scleroderma research studies here in B.C. and across Canada. To name just a few of the current and exciting research projects underway in 2020, there are studies to: identify too high or too low genome sequences within cells leading to effective treatment of skin and/or lung damage in patients (Vancouver), develop stem cell transplant guidelines leading to a pathway for assessing transplant candidates (Winnipeg), investigate the large spectrum of scleroderma-related disorders like lung disease, Sjögren's syndrome and skin ulcers (Toronto), detect and identify the potential role of serum autoantibodies leading to better diagnosis and development of new therapies for scleroderma (Montreal), investigate and develop self-management, hand function and psychosocial rehabilitative interventions leading to online programs and toolkits to help patients cope with important challenges, improving their quality of everyday life (Montreal) and studies to identify a core set of items to classify scleroderma renal crisis (Halifax).