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  • Home
  • SMA
    • About SMA
    • Newly diagnosed
  • Community
    • About Us
    • Membership
    • Fundraising
    • Resources
  • Events
    • Upcoming events
    • SMA Camp
  • Care
    • Treatments
  • Contact Us
  • Donate A Car
  • Donate
  • Français

Category Archives: Member Update

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Novartis Community Update

Member UpdateBy mollyoceanNovember 8, 2021

SMA My Way Canada

Member UpdateBy mollyoceanSeptember 30, 2021

Dear Canada’s SMA community, Navigating life with SMA can often be challenging – but also rewarding. As a community, we are always looking to lift one another up and share…

New Online Support Hub for Canada’s SMA Community

Member UpdateBy mollyoceanSeptember 30, 2021

Dear SMA community, We are excited to share the recent launch of a new website for the SMA community – SMA My Way Canada.   SMA My Way Canada is…

Understanding Bulbar Function: Chloe’s Story

Member UpdateBy mollyoceanSeptember 17, 2021

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…

Health Canada approves Risdiplam!

Member Update, Research NewsBy mollyoceanApril 16, 2021

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…

Novartis Community Statement – CADTH RECOMMENDATION & ACCESS TO ZOLGENSMA

Member UpdateBy mollyoceanApril 2, 2021

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…

Media Release

Member UpdateBy mollyoceanFebruary 25, 2021

 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…

Disability Tax Credit Amid the COVID-19 Pandemic

Member UpdateBy mollyoceanFebruary 25, 2021

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…

Interim access to Zolgensma for Alberta children

Member Update, Research NewsBy ebessoJanuary 28, 2021

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…

Zoom Meeting.

Covid-19 and SMA, Member UpdateBy ebessoMay 1, 2020

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)…

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