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BOARD OF TRUSTEES

ANIELLO CAVALLARO (QC)

JENNA STEWART (ON)

SARAH CHEUNG (BC)

ANGELA MOSCO (AB)

JANIK DIONNE (NB)

SCIENTIFIC ADVISORY BOARD

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QUESTIONS

Please email Susi Vander Wyk at head office

CURESMA@TELUS.NET

CURE SMA CANADA

103-7134 VEDDER RD
CHILLIWACK, BC V2R 4G4

TOLL FREE 855.824.1277

BC 604.824.1277

FAX 604.824.1363

NATIONAL OFFICE

SUSI VANDER WYK
Executive Director
curesma@telus.net

ROBERT MARKS
Executive Coordinator
sma_can@telus.net

NICOLE LAMONT
National Communications Associate
nicole@curesma.ca

CHAPTERS

BC CHAPTER PRESIDENT

ANNE BELANGER
anne@curesma.ca

QUEBEC CHAPTER PRESIDENTS

ISABELLE BOUDREAULT
isabelle.boudreault@aircanada.ca
AMY LOIGNON
pikoloca@yahoo.ca

Cure SMA Canada

4 weeks ago

Health Canada approved Zolgensma!

Major announcement and what it means for the Canadian SMA community.

Cure SMA Canada is thrilled to share the news of Health Canada's announcement of the issued Notice of Compliance for Zolgensma.

What does that mean?

It means that we have passed the first hurdle in Canada to ensure our young SMA patients will be able to access the gene therapy treatment, Zolgensma by Novartis! Our next hurdle is to ensure CADTH (Canadian Agency for Drugs, Technology and Health) and INESSS (Institut national d’excellence en santé et en services sociaux) make a positive recommendation and ultimately that the provinces as a group approve Zolgensma for reimbursement.

Until we see the provincial approvals, we do know that Novartis has been in discussions with the pan-Canadian Pharmaceutical Alliance (pCPA) to allow the provincial and territorial governments to consider reimbursement for Zolgensma on a case-by-case basis until the health technology assessment and formal negotiations are complete. This is great news as it allows provinces a pathway to potentially approve individual patients in the interim.

For better understand the Canadian Drug Approval pathway, click on the link below to access an easy to understand flow chart. To see the community announcements, please click on the links on our website which are offered in both official languages.

Cure SMA Canada is dedicated to ensure that the final goal of patient's ability to access Zolgensma, is achieved in a timely manner with the full support of the provinces. It is important for our patients to have treatment options. We have been waiting lifetimes for these treatments to be approved in Canada for our waiting patients. Every day not accessing them is filled with anxiety.

We won't stop fighting until all of our patients are accessing treatment, Cure SMA Canada gives that promise to our community.
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Cure SMA Canada est heureux de vous annoncer l'avis de conformité émis pour Zolgensma par Santé Canada. Qu'est-ce que ça veut dire? Cela signifie que nous avons franchi le premier obstacle au Canada pour nous assurer que nos jeunes patients atteints d'AS pourront accéder au traitement de thérapie génique, Zolgensma by Novartis! Notre prochain obstacle est de faire en sorte que l'ACMTS (Agence canadienne des médicaments, de la technologie et de la santé) et l'INESSS (Institut national d'excellence en santé et en services sociaux) fassent une recommandation positive et que les provinces en tant que groupe approuvent le remboursement de Zolgensma.

Jusqu'à ce que l'évaluation et les négociations formelles soient terminées, nous savons que Novartis est en discussion avec l'Alliance pharmaceutique pancanadienne pour permettre aux gouvernements provinciaux et territoriaux d'envisager le remboursement de Zolgensma au cas par cas . Il s'agit d'une excellente nouvelle, car cela permettra aux provinces d'approuver éventuellement des patients individuels durant l'attente. Pour mieux comprendre le processus d'approbation des médicaments au Canada, cliquez sur le lien ci-dessous pour accéder à un organigramme facile à comprendre. Pour voir les annonces communautaires, veuillez cliquer sur les liens ci-dessous qui sont offerts dans les deux langues officielles.

Cure SMA Canada est déterminé à faire en sorte que l'objectif final de la capacité des patients d'accéder à Zolgensma soit atteint en temps opportun avec le plein appui des provinces. Il est important pour nos patients d'avoir des options de traitement. Nous avons attendu toute une vie que ces traitements soient approuvés au Canada pour nos patients en attente. Chaque jour, ne pas y accéder est rempli d'anxiété. Nous n'arrêterons pas de nous battre tant que tous nos patients n'auront pas accès au traitement, Cure SMA Canada fait cette promesse à notre communauté. ...

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Cure SMA Canada

4 weeks ago

Our 72 hour auction is now live! This fundraiser is helping raise money for our SMA family camp 🏕 Be sure to join at fb.me/e/1We9DknsN ...

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Cure SMA Canada

1 month ago

Reminder to register for our Winter Conference this weekend, Dec 10 to 13. 💜🧡❄️

Join us virtually for some amazing presenters and great information. Event is free to attend but you must register!

Learn about what sessions we have lined up, and how to register, at www.eventbrite.com/e/cure-sma-canada-2020-winter-conference-tickets-126880839005

*Note: Registration cut off is Wednesday, December 9 at 12:00 pm PST for Thursday’s sessions. ...

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Cure SMA Canada

1 month ago

What a powerful story!

"First baby in Canada identified with SMA using newborn screening: given early treatment, ‘loves to move’"

www.cheo.on.ca/en/news/first-baby-in-canada-identified-with-sma-using-newborn-screening.aspx ...

First baby in Canada identified with SMA using newborn screening

www.cheo.on.ca

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.

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Cure SMA Canada

1 month ago

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.

Learn more and register ✨
www.eventbrite.com/e/cure-sma-canada-2020-winter-conference-tickets-126880839005 ...

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