sclerosmile

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.

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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.

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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!

Dr. Brett Thombs giving his presentation on health care management and decision-making

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!

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Share your scleroderma story

  • | Apr 15, 2016

Individuals living with scleroderma are the best resource to help others live better with the disease. Therefore, we are looking for individuals with scleroderma to share their experiences of living with the disease in a brief video testimony, as well as strategies that have helped you live better with scleroderma.

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Recap of the 2015 Scleroderma National Conference

  • | Sep 24, 2015

We would like to thank everyone who participated in the Scleroderma Society of Canada’s 2015 Scleroderma National Conference in Hamilton, Ontario, on September 18th and 19th – it was a huge success!

Dr.El-Baalbaki and the video crew

Try-out of video recordings for online programs

  • | Apr 16, 2015

An important activity of the SPIN team is to develop online programs that help individuals with scleroderma live better with the disease. In these programs, we do not want to simply put a textbook online, but rather try to find engaging, creative and more personal ways to provide information to individuals living with scleroderma. One way to do this, is through brief video clips with experts who explain how certain techniques, such as relaxation, can help you cope better with the consequences of scleroderma. On Monday April 6th, Marie-Eve Carrier (SPIN Coordinator) and Linda Kwakkenbos (SPIN Co-Director), together with the video crew, did a first try-out recording for these video clips. Dr. Ghassan El-Baalbaki, SPIN member from UQAM in Montréal kindly helped us with this, and made his debut on camera. Given his great talent for presentation, we expect him to soon be casted for a role in Hollywood! In the next months, the SPIN team will record videos of experts in mental health and scleroderma, as well as experiences from individuals living with scleroderma, which will be crucial to the further development of the online supportive programs.

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Update on the SPIN Cohort study

  • | Feb 25, 2015

Enrolment in the SPIN Cohort is going very well. We started almost a year ago, in March 2014, with a couple of pilot-sites, and after smoothing out some bumps along the way, we now have 23 sites enrolling participants for our study! Currently, there are almost 600 individuals with scleroderma enrolled in the Cohort, and a little over 400 have completed their baseline measures. We are very thankful to the enrolling physicians, their teams, and of course the participants who take the time to complete the measures online every 3 months.

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Dr. Linda Kwakkenbos is the new Co-Director of SPIN

  • | Nov 07, 2014

During SPIN’s Annual Meeting in Anaheim, in the presence of all SPIN members, Dr. Kwakkenbos was named SPIN’s Co-Director by the Steering Committee, a title that reflects her hard work and dedication to SPIN.

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Body Image Team Meeting

  • | May 09, 2013

Discussions to gain more insight into patients’ perspectives on the SPIN Body Image intervention. Furthermore, the general framework of the intervention was discussed, as well as examples of engaging virtual elements. It was also discussed how elements from these general interventions could be used and adapted for people with scleroderma.