Dear Cure SMA Canada members and supporters, We have an exciting national event that you can look forward to and participate in!! Sunday, August 18, 2019 will be Canada’s Annual National SMA Awareness Day. This national event will be celebrated in unison across the Canada. Synchronized Lighting Times Newfoundland Time Zone 6:30 Atlantic Time Zone…
Dear Canada’s SMA Community and our supporters, Thank you for your continued trust and support as we inch our way through the process of access to treatment here in Canada. We are, and continue to work hard to achieve what we set out to do from the very beginning, to advocate for access for all…
Ontario Government got it right!! We at Cure SMA Canada are very happy and proud to announce that the government of the province of Ontario has communicated with us that they have come to a mutually agreeable decision to approve reimbursement for Ontario’s Spinal Muscular Atrophy patients. As a follow-up to the national review process…
In response to yesterday’s wonderful announcement that the province of Ontario will be providing access to Spinraza, Biogen has provided a community statement. We at Cure SMA Canada would like to confirm that we will continue to advocate for Canada’s remaining patients to be able to access treatment. The frustration of Canada’s approval process is…
Cure SMA Canada speaks out for the rights of Canadians affected by Spinal Muscular Atrophy to access treatment. Please share. All patients affected by SMA in Canada have a need and a right to treatment! Youtube Video
Cure SMA Canada – Patient Community Announcement Cure SMA Canada is very happy to announce that the pCPA, provinces and Biogen have FINALLY come to an agreement for the first submission of Nusinersen/Spinraza for review. We are pleased to confirm that all patients with type 1 in all jurisdictions in Canada will be able to…
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…