SPRING SUPPORT MEETING
The Scleroderma Association of Saskatchewan is holding our next meeting on March 30, 2019. Details are as follows:
Location: Regina Police Service – Greer Room – 1717 Osler St Regina, SK
9:30 – 11:30 Executive meeting – all are welcome
12:30 – 1:30 Sharing Time and Awareness Walk (Update from March 14 Meeting)
1:30 – 2:30 Presenter Charlotte L’Oste-Brown
– Charlotte will share her journey from her diagnosis through to her successful double lung transplant.
“In September 2003 I was given a diagnosis of scleroderma, then polymyositis, then finally pulmonary fibrosis. At the time the Doctors said that I could expect seven years to live if I looked after myself. However, the one Doctor said this is a very nasty disease and down the road I would need a double lung transplant.”
Date TBD ~ CSRG
The Scleroderma Association of Saskatchewan has donated $7,000 to the Canadian
Scleroderma Research Group (CSRG) in support of a Stem-cell research project that
Doctor Murray Baron presented at the conference in Halifax. The CSRG plans to hold an
important meeting regarding the planning of stem cell transplants for scleroderma in
Canada. Dr. Baron explains “The goal of the meeting is several fold but includes
developing a national strategy for how to perform the transplants, how to screen patients
to decide who is eligible and how to perform research at the same time to try to make the
outcomes even better.”
The CSRG is currently establishing planning meetings to occur next spring.
On behalf of Scleroderma Canada, we would like to forward a link for a survey they are conducting. In order for Scleroderma Canada to effectively support advocacy and relevant research agendas, they would like to find out what issues are of importance to individuals living with Scleroderma. The survey has questions about symptoms that people with Scleroderma might experience, as well as psychological, social, employment issues and issues related to the ability to obtain appropriate healthcare.
They would greatly appreciate you taking the time to complete the survey (link above) which will take approximately 20 minutes.
2019 WALK, RUN OR RIDE FOR SCLERODERMA
The Scleroderma Association of Saskatchewan is about to begin planning the 4th Annual Walk, Run or Ride for Scleroderma, taking place on Sunday, June 2 in Regina. We would love to have some of our members join the Walk Planning Committee! If you are interested in joining our team, please respond to this email by Wednesday, February 27, 2019.