Zoom Meeting.

Cure SMA Canada is inviting you to a scheduled Zoom meeting. Topic: Cure SMA Canada – Treatment info and updates Time: May 7, 2020 09:00 Pacific Time (US and Canada) Join Zoom Meeting https://us02web.zoom.us/j/89905074506?pwd=bkVWbUhTSVhqZC9CL3lyWXZQK2poZz09 Meeting ID: 899 0507 4506 Password: curesma One tap mobile +16699006833,,89905074506# US (San Jose) +19294362866,,89905074506# US (New York) Dial by your…

World Muscle Society position and advice

Covid-19 and people with neuromuscular disorders:   World Muscle Society position and advice – Update 02-04-2020 Amendments to the original document text 3. What consequences does the risk of Covid-19 infection have for treatments used in people with NMD? Additional advice in this paragraph: • Patients should continue their usual cardiac treatments, including Angiotensin-Converting Enzyme…

SMA Data Update

 SMA Data update with Biogen.   Dear members of the SMA community, Following your request for updates regarding new SMA data in adult patients, we wanted to share that a real-world study of nusinersen (SPINRAZA ™) use in teens and adults with SMA was published in The Lancet Neurology on March 18, 2020 in a…

National SMA Conference!

  Come Join Us at the National SMA Conference! February 27 – 29, 2020 Hyatt Regency, King St., Toronto, ON Receive information and support for SMA Patients and Caregivers ·        Learn about the latest in SMA treatment access in Canada ·        Understand the Canadian pharmaceutical access process ·        Learn about Canadian research projects and how they impact the…

Nova Scotia broadens access to SPINRAZA™ (nusinersen injection)Cure SMA Canada is recognized for our contribution to the Canadian government’s understanding of the impact of SMA

Cure SMA Canada is recognized for our contribution to the Canadian government’s understanding of the impact of SMA and played a major role in the associated changes to access to treatment brought by this contribution. Thank you to all of those who participated and supported Cure SMA Canada initiatives!  Together we truly do make a…

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…

Petition for BC, MB, PE, NL, NS Health Ministries Please share this important petition! Imagine what it was like at SMA camp west this year. As we looked around the lunch room, we saw how many of the SMA patients were accessing treatment.  We were all so very happy for them!  To hear stories of…