At the National Scleroderma Conference in Calgary this September, we were excited to announce the launch of SPIN’s online platform for sharing our scleroderma support programs: SPIN-SHARE. Once ready, these programs will be available to the public free-of-charge through Canadian and international patient organization websites.
Dr. Brett Thombs gave a preview of SPIN’s first support program, which addresses hand function limitations in scleroderma, and will be released to the public in Spring 2019. After the SPIN-SHARE launch, SPIN received a generous donation from Scleroderma Manitoba. Sclérodermie Québec, the Scleroderma Association of BC and the Scleroderma Society of Nova Scotia have also provided substantial funding for SPIN-SHARE. SPIN also introduced the Maureen Sauvé Inspiration Award, in recognition of her invaluable work in the scleroderma community. Our first recipient was Joep Welling, a Patient Advisory Board member and SPIN Project Leader for our hand function program. Finally, SPIN trainee Danielle Rice won a conference award for her poster on challenges and support services for scleroderma caregivers.
We were very grateful for the involvement of patient attendees who helped with two SPIN projects. Eight people participated in a focus group to help us better understand the barriers and facilitators for exercise in scleroderma. Others shared their experiences living with scleroderma in video testimonies that will be featured in our online toolkits. Thank you for your contributions to scleroderma research!
You can check out the rest of our pictures from the event on SPIN’s Facebook page.