This video was created with the intention of educating SMA families, and the general public, about the important role bulbar function testing plays in the treatment journey of a child living with SMA. With the help of the Sousa family we were able to convey Chloe’s journey in a fun and innovative way while tackling…
Treatment potential for our pediatric and adult patients! Dear Canada’s SMA community, Cure SMA Canada is happy to share that approval has been issued by Health Canada for Risdiplam for SMA patients 2 months of age and older. Risdiplam is an oral treatment from Roche that treats SMA by increasing the SMN levels. The convenience…
March 30, 2021 As requested, and as part of our ongoing commitment to keep you informed of important milestones regarding Zolgensma® (onasemnogene abeparvovec), I am writing on behalf of Novartis to let you know that on Friday March 26th, the Canadian Agency for Drugs and Technologies in Health (CADTH) published their recommendation. Zolgensma has…
First baby in Canada identified with SMA using newborn screening: given early treatment, ‘loves to move’ Dec. 2, 2020—OTTAWA— When Newborn Screening Ontario diagnosed spinal muscular atrophy (SMA) in Aidan Deschamps’ bloodspot, he became the first baby in Canada identified with the genetic, neuromuscular condition through a provincial newborn screening program. Just six days…
The COVID-19 pandemic, as you may well know, is taking a particularly heavy toll on Canadians with disabilities. So now, more than ever getting approved for the Disability Tax Credit or CPP Disability makes a huge difference to the lives of disabled Canadians and their families. We think your team and those you are helping…
Families of Alberta children suffering from spinal muscular atrophy (SMA) may now be eligible to receive funding for gene replacement therapy treatment. Alberta’s government is working with Novartis Pharmaceuticals Canada Inc. to provide interim patient access to Zolgensma. SMA is a rare and progressive genetic disorder that causes muscle wasting. Alberta children with SMA and…
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…
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 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…
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