Year-end thank you to the Canadian scleroderma community

by Claire Fedoruk | Dec 21, 2018

Screen Shot 2018-11-30 at 1.13.43 PMAs 2018 draws to a close, we would like to express our deepest gratitude to all of SPIN’s partner organizations who have donated their hard-earned funds to our projects over the past year. 

SPIN has only achieved so much because of its tremendous partners across Canada and the world. People with scleroderma and their loved ones work with SPIN in so many ways: by prioritizing research topics and program ideas, helping develop SPIN’s programs, providing project oversight, and working with SPIN to disseminate research results and, starting in 2019, disseminating SPIN programs as well. They do this by participating in SPIN’s online cohort and completing SPIN surveys, by participating in focus groups, by taking active roles on SPIN’s Patient Advisory Board, and by working on project-specific Advisory Teams.

The Canadian scleroderma community has also supported SPIN through its hard work in fundraising. In fact, SPIN was launched in 2011 through a donation from Scleroderma Canada and the Scleroderma Society of Ontario. This provided funds for a coordinator, who helped develop funding proposals that got SPIN off the ground with large grants from the Canadian Institutes of Health Research (CIHR). Sclérodermie Québec also contributed early on by providing funds for one of SPIN’s first meetings with its international team of investigators. Over the years, the Scleroderma Society of Ontario has made several other important contributions, including funding to initiate work on SPIN’s Support group Leader EDucation (SPIN-SSLED) Program, for instance, among others.

Over the last year, SPIN has been grateful to receive many generous donations from its Canadian partners. These donations will provide funding for SPIN research and to disseminate SPIN’s programs to people across Canada.

In November 2017, SPIN learned that it received a CIHR Patient-Oriented Research Collaboration Grant to begin background research that will lead to the development of SPIN-PACE, an online program to support physical activity in people with scleroderma. This was a matched grant, meaning that it required a partner to match CIHR funding, and the Scleroderma Society of Ontario generously committed to match CIHR funding, allowing the SPIN-PACE project to get off to a fantastic start. Led by Julie Cumin and Sami Harb, the SPIN Team conducted nine focus groups to better understand the problems that people with scleroderma face with respect to exercise, which will provide information necessary for a large survey and then program development.

From the end of 2017 to 2018, SPIN also received generous donations to support the SPIN-SHARE arm of its work from Sclérodermie Québec, the Scleroderma Society of Nova Scotia, the Scleroderma Association of BC, Scleroderma Manitoba, and the Scleroderma Association of Saskatchewan. Recognizing the enthusiastic support of people with scleroderma, the Jewish General Hospital Foundation also committed funds to support SPIN-SHARE. SPIN-SHARE is dedicated to ensuring that SPIN’s programs will be made available to people with scleroderma once the programs have been developed and tested. 

With this support, the SPIN-SHARE team will be able to provide free public access to its online toolkits. This funding has allowed SPIN staff to work with an information management team to set up the public SPIN-SHARE website that will house the SPIN toolkits, and will help us maintain the website so the public can access SPIN toolkits for years to come. The first of these toolkits, designed to improve hand function in scleroderma, will be available to the public in Spring 2019.

On November 24th, SPIN received another generous donation from the Scleroderma Society of Nova Scotia, towards the development of a decision-making tool to help scleroderma patients make difficult medical decisions. This funding has allowed us to launch the first stage of developing this tool: an online survey about which decisions are the toughest to make for people with scleroderma.

In addition to these Canadian contributions, an important international partner, the World Scleroderma Foundation (WSF) awarded a competitive grant to SPIN Co-Director Dr. Linda Kwakkenbos. This grant will provide funds to review evidence on stem cell transplants in scleroderma and to work with patients to develop a decision aide to help patients to evaluate the potential benefits and risks from the procedure.

The entire SPIN team is incredibly grateful that our partner organizations share and support SPIN’s vision of making evidence-based support tools available to people with scleroderma in Canada and around the world. Thanks to everybody in the Canadian scleroderma community!