Biogen Press Release

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…

Ontario Expands Coverage of Spinraza!!

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…

Roche Community Update

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…

CADTH patient input form

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…

A picture is worth 1000 words

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…