SPIN Renews its Mission on Rare Disease Day 2019

• | Feb 27, 2019

On Rare Disease Day 2019, SPIN’s mission is just as pressing as when it was first conceived ten years ago, and this year’s theme of “Bridging health and social care” is particularly relevant to SPIN’s work. The online support programs that SPIN is developing will support people with scleroderma as they navigate the many problems that scleroderma presents in a day-to-day life, including medical, social, and psychological challenges.

Funding received for clinical trial of the SPIN-SSLED Program

• | Feb 07, 2019

We're excited to announce that SPIN has received funding from the Canadian Institutes of Health Research (CIHR) to run a clinical trial of the SPIN-SSLED Program, a training course for scleroderma support group leaders.

Year-end thank you to the Canadian scleroderma community

• | Dec 21, 2018

As 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.

A warm welcome to the new SPIN-PACE Patient Advisory Team

• | Dec 17, 2018

We are thrilled to announce the formation of a new Patient Advisory Team that will oversee the development of the SPIN Physical Activity Enhancement (PACE) Project. Alongside SPIN researchers and healthcare providers, these patient advocates will help develop an online program to help people living with scleroderma to stay physically active.

Highlighting the contributions of the SPIN-SSLED Patient Advisory Team

• | Dec 06, 2018

In today’s post, we would like to highlight the contributions of the SPIN-SSLED Patient Advisory Team, which consists of ten patients and patient advocates who generously volunteer their time to work on the Scleroderma Support group Leader EDucation (SSLED) Project.

SPIN at the Scleroderma Society of Ontario Patient Events

• | Dec 03, 2018

SPIN at the London Ontario Patient Forum on November 11th and the Ottawa Information Session on November 27th.

A big thank you to the Scleroderma Society of Nova Scotia!

• | Nov 29, 2018

On November 24th, SPIN Director Dr. Brett Thombs travelled to Halifax to discuss SPIN programs that are expected to be available to the scleroderma community in 2019, including the SPIN-HAND program and the SPIN Support group Leader Education (SPIN-SSLED) Program.

Thank you to the Scleroderma Association of Saskatchewan!

• | Oct 24, 2018

We are thrilled to announce that the Scleroderma Association of Saskatchewan has made a generous donation to SPIN-SHARE. This donation will go towards the dissemination of SPIN’s first online toolkit to support hand limitations in scleroderma, which will be available to the public in Spring 2019.

SPIN Recap of the 2018 Scleroderma Canada National Conference

• | Oct 10, 2018

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.

Follow SPIN on Social Media!

• | Jun 07, 2018

In honour of Scleroderma Awareness Month, SPIN is launching social media! Follow us on Facebook and Twitter for updates on our research activities, photos from scleroderma-related events, and interviews with patient advocates, rheumatologists, and other members of the community.

SPIN Research Suggestions

• | Apr 19, 2018

With many projects and toolkits underway, SPIN would love to hear your suggestions for which research questions we should address next!

The SPIN-SHARE project: Making SPIN’s online support programs accessible for free

• | Mar 20, 2018

From its very beginnings, SPIN has always prioritised the accessibility and distribution of our online supportive toolkits. We are therefore very proud to announce the creation of the SPIN-SHARE project, which will spearhead SPIN’s outreach activities and distribution of our programs. During the 5th Systemic Sclerosis World Congress, which was held in Bordeaux, France from February 15th to 17th 2018, we held a meeting to launch SPIN-SHARE and invited patient organisations from around the world to attend.

Thank you to the Scleroderma Association of B.C.!

• | Dec 12, 2017

The SPIN team would like to offer our sincerest gratitude to the Scleroderma Association of British Colombia for their generous $10,000 contribution to the SPIN-SHARE project.

Thank you to the Scleroderma Society of Nova Scotia!

• | Dec 12, 2017

The SPIN team would like to offer our gratitude to the Scleroderma Society of Nova Scotia, its board members, and its President, Jason Doucette, for their generous $5,000 contribution to the SPIN-SHARE project.

Congratulations to Maureen Sauve on her induction into the Hamilton Gallery of Distinction!

• | Nov 21, 2017

Please join us in congratulating SPIN Patient Advisory Board Co-Chair Maureen Sauvé on her induction into the Hamilton Gallery of Distinction!

A new way of saying thank you!

• | Nov 07, 2017

SPIN is proud to present its newest way of saying thank you! Click here to meet the team behind SPIN and to take a tour of our Montreal office.

SPIN and the Scleroderma Framed Foundation

• | Jun 26, 2017

SPIN's Co-Director, Dr. Linda Kwakkenbos, posing with 2 models from the Federation of European Scleroderma Associations (FESCA) campaign for World Scleroderma Day 2017.

SPIN at the Walk for Scleroderma

• | Jun 15, 2017

SPIN recently had the pleasure of attending the first annual Walk for Scleroderma held on June 4th, at Parc du Domaine Vert in Mirabel.

A first look at "Share Your Scleroderma Story"

• | Apr 21, 2017

Here are some examples of testimonials we filmed last summer, with Amy Gietzen (Scleroderma National Patient Education Conference, in New Orleans, USA) and Geneviève Guillot (Scleroderma Canada Annual National Conference, in Montréal, Qc, Canada), sharing their experiences with diagnosis in English and French!

A quick update on SPIN

• | Oct 25, 2016

SPIN is constantly growing and now has 36 recruiting sites located in Canada, the United States, France, and the United Kingdom. The number of active participants enrolled in SPIN has reached 1289. The continued success of this project would not be possible without your participation!