Power to go! There are times when all of us want electricity when we are miles from the nearest electrical outlet. Two key components to having power on the go are a mobile digital power inverter and then a battery. Ideally, a deep cell battery will handle the constant drain and recharge that you’re going…
5 July 2018 Dear SMA community members, As requested, we are very pleased to share with you an update of the RG7916 programme, which has reached a number of milestones. We would also like to extend special thanks to study participants and their families for their incredible commitment to advancing the progress of research in…
Things are happening!! Join in! Participate! Support Cure SMA Canada as we work hard to support your family! Spinraza update Winnipeg Health Minister Meeting – SMA Demonstration Roche update Rebecca Run 2018 SMA Camp West Florence and Charlie’s 10K to end SMA Fundraiser Canada’s National SMA Awareness Day Edmonton Walk N Roll Swing for Hope…
Susi’s story: One mother’s fight for access to lifesaving treatment In March, a group of families descended on Ottawa intent on making their voices heard at Parliament Hill. They were there to raise awareness about spinal muscular atrophy (SMA), a rare and fatal neuromuscular disorder in which motor neurons progressively deteriorate, and to make clear…
Dear Cure SMA Canada Community, We’d like to bring you up to date on some developments of the Spinraza approval process here in Canada. Due to the lack of compatible agreement between Biogen and the pCPA/provincial governments, Biogen has resubmitted their application with CADTH. This resubmission was necessary because of the need for the provinces to…
If Australia and 35 other countries can come to an agreement with Biogen, SO CAN CANADA!!! WHAT IS TAKING SO LONG CANADA???!!! CANADIANS HAVE NEED ACCESS NOW!! TICK TOCK CANADA! http://www.health.gov.au/internet/ministers/publishing.nsf/Content/97A19CED2588BA3ACA2582860010075C/$File/GH051.pdf https://www.smh.com.au/politics/federal/it-s-magic-families-advocates-celebrate-lifesaving-drug-announcement-20180506-p4zdoa.html Susi Vander Wyk Executive Director Cure SMA Canada 103-7134 Vedder Rd, Chilliwack, BC, V2R 4G4 1-855-824-1277 (toll free) www.curesma.ca “What lies behind us…
Patient Input Template for CADTH CDR and pCODR Programs Name of the Drug and Indication Spinraza (nusinersin) for Spinal Muscular Atrophy Name of the Patient Group Canadian Organization for Rare Disorders and Cure SMA Canada Author of the Submission Durhane Wong-Rieger and Susi Vander Wyk Name of the Primary Contact for This Submission Durhane Wong-Rieger…
Actions completed and more action coming! I would like to update you on some recent activities of Cure SMA Canada. February 10, 2018 – Montreal – Sammy’s Valentine’s Gala was held to raise funds and awareness for Cure SMA Canada. This gala was supported and attended by representatives from Biogen and AveXis and gave the opportunity to hold…
These photos were recently sent to Cure SMA Canada from James Radke, President at Zeal Access Inc. with the caption, “A picture is worth 1000 words”. Susi Vander Wyk speaks to a panel of various levels of government officials. In a room filled with representives of various government bodies, drug companies, health industry, and reps…
Dear Cure SMA Canada Community and supporters, Thank you for your continued vigilance in our many efforts for fighting for access to treatment. Cure SMA Canada has been working hard to have the concerns of the SMA community heard by people that are in the driver’s seat of the decision making process. What we’ve been…