October 7, 2019 Dear members of the SMA community, As part of our promise and commitment to keep the Canadian SMA community apprised of important milestones regarding SPINRAZA™, we are sharing an update on recent developments regarding reimbursement in the province of Nova Scotia. Effective October 1, 2019, the Government of Nova Scotia has expanded…
Press Release NURTURE study shows pre-symptomatic Spinal Muscular Atrophy (SMA) infants treated with SPINRAZA™ (nusinersen injection) attained positive results ▪ Treatment with SPINRAZA™ resulted in survival of 100 percent of infants and none requiring permanent ventilation ▪ Recently published outcomes include motor milestones achieved in 100 percent of infants sitting withoutsupport and 88 percent…
August 29, 2019 Dear members of the SMA community, As part of our promise and commitment to keep the Canadian SMA community apprised of important milestones regarding SPINRAZA™, we are sharing an update on recent developments regarding reimbursement in the province of New Brunswick. Effective August 26, 2019, the Government of New Brunswick has expanded…
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…
How does it feel to be able to access a life saving treatment and know others aren’t able to?
How has the experience of loss of function affected your family?