Cure SMA Canada’s national virtual conference to be held Dec 10-13, 2020

This is a wonderful opportunity to learn about the latest and greatest in care and treatment of SMA!
We will be offering multiple presentations by the professional and SMA community on the following topics and more!

  • Grief session – Life after the loss of a child
  • Treatment information  – Zolgensma, Risdiplam and Spinraza
  • Canadian research project – The importance of Canadian research!!
  • Nutrition  –  The SMA diet
  • Orthopedic Surgeon – caring for the back and bones
  • Respirologist – Support those lungs!
  • Physiotherapy
  • Newborn screening
  • SMA family camp – fun family support
  • Caring for the caregiver
  • Coping with covid isolation
  • Sexual health – for teen and adult women affected by SMA
  • Is there anyone out there for me?  Dating for teens and adults affected by SMA
  • more topics and speakers!

Thank you to our wonderful sponsors for this event!
Our Diamond sponsors – Novartis
Our Platinum sponsors – Roche
Our Gold sponsors – Biogen

We will hold most topics in both official languages.


Thank you to our wonderful sponsors for supporting the Rebecca Run!

These funds will make a big difference for bettering the lives of Canadian SMA patients and their families!

Virtual Rebecca Run for SMA

The global COVID-19 pandemic means that big changes are necessary to keep our community safe, which is why the 2020 Rebecca Run for SMA is going 100% virtual. Our 19-year tradition will continue!

A virtual run means  we can still run for Cure SMA Canada and help kids living with SMA.

A virtual run enables you to run on your own, anytime, anywhere, as long as you practice physical distancing.

We encourage you to stay healthy and help #flattenthecurve solo in our virtual run.

The Virtual Rebecca Run for SMA can occur anytime between July 4 – 25, 2020.

We mail your run shirt and medal directly to you and you have the ability to share your Run pictures and you can upload your run results as well. Kids registered in the Fun Run will also get their finisher memento in the mail.

​Create a virtual team, recruit friends and family, collectively fundraise with more focus and urgency than ever before.

Since we started the run in 2002, we have raised more than $2.8 million for Cure SMA Canada in support of children and families living with SMA.

Join us this July at the Virtual Rebecca Run for SMA and help us help kids and their families living with SMA.


Knowledge is power! Learn about the latest and greatest in Spinal Muscular Atrophy research, treatment and care. Network with others!

Start :  Thursday Feb 27th 5pm

End :     Saturday  Feb 29 4pm

where:  Hyatt Regency Toronto

              370 King St W,

              Toronto, ON

              M5V 1J9

              (416) 343-1234




Sammy’s Valentine Gala

Every year it’s gotten bigger and better. We found our first treatment and now we are close to finding a cure. Join us Saturday Feb 15 at the Crown Plaza!

When: Feb 15, 2020
Time: 18:00

Where: Crown Plaza
6600 Chemin de la Côte-de-Liesse,
Montréal, QC H4T 1E3

Hotel website

Entertainment : Crystal Waters

Sneak peak


103-7134 VEDDER RD.


TOLL FREE 855.824.1277

BC 604.824.1277

FAX 604.824.1363


Please email Susi Vander Wyk at head office



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 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…