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ANIELLO CAVALLARO (QC)

JENNA STEWART (ON)

SARAH CHEUNG (BC)

ANGELA MOSCO (AB)

JANIK DIONNE (NB)

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CURESMA@TELUS.NET

CURE SMA CANADA

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CHILLIWACK, BC V2R 4G4

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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

2 days ago

SMA Awareness Month!
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This Monday started day 1 of our virtual SMA camp. Here is some families logging onto our day 1 camp bingo session.
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Fun was had and prizes were won! Can't wait to see you all again soon for more activities 💜🧡
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#SMAcampBINGO #SMAawarenessmonth ...

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Cure SMA Canada

6 days ago

August marks SMA awareness month 💜🧡
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Keep checking back for different facts about SMA during this month, as well as a new fun way to raise awareness to be posted soon! 🏡
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To kick off the month feel free to share your pictures of yourself if you have SMA, or your child if they have SMA, along with your/their type so we can compose a feed in honor of all our SMA warriors 💪
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#curesmacanada #SMAawarenessmonth ...

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Cure SMA Canada

3 weeks ago

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! ...

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Cure SMA Canada

1 month ago

Aux membres de la communauté de l’amyotrophie spinale (AS),

Pour donner suite à votre demande de mises à jour et de faits nouveaux relatifs aux études cliniques sur l’AS, nous avons souhaité vous faire part des nouveaux résultats de l’étude NURTURE chez les patients atteints d’AS au stade présymptomatique traités par le nusinersen (SPINRAZA MC ) qui ont été présentés ce mois-ci lors de la rencontre sur la recherche et les soins cliniques organisée virtuellement par
Cure SMA (États-Unis). Les nouvelles données comprennent près d’un an de suivi supplémentaire pour les participants à l’étude NURTURE, l’étude la plus longue à ce jour chez les enfants atteints d’AS qui sont traités au stade présymptomatique.

Les résultats de cette étude ouverte de phase II en cours montrent que SPINRAZA procure aux participants des bienfaits durables pendant une période pouvant aller jusqu’à 4,8 ans avec un traitement précoce et continu; tous les participants sont demeurés vivants sans avoir besoin de
ventilation assistée continue. L’analyse est fondée sur l’examen de 25 patients atteints d’AS diagnostiquée par analyse génétique (les plus susceptibles de présenter une AS de type 1 ou 2) au stade présymptomatique qui ont reçu la première dose de SPINRAZA avant l’âge de six semaines.

L’étude a été prolongée de trois ans, ce qui a permis à Biogen d’évaluer l’efficacité et l’innocuité à long terme de SPINRAZA chez les patients jusqu’à l’âge de huit ans et de mieux comprendre l’effet du traitement précoce.

Des renseignements supplémentaires concernant les nouveaux résultats de l’étude NURTURE sont
accessibles ici. De plus amples renseignements sur l’étude NURTURE (NCT02386553) sont accessibles sur
le site clinicaltrials.gov. Si vous avez des questions concernant ces données ou l’étude NURTURE, veuillez communiquer avec un médecin qui traite l’AS.
Cordialement,

Biogen Canada

investors.biogen.com/news-releases/news-release-details/new-results-landmark-nurture-study-show-p... ...

New Results From Landmark NURTURE Study Show That Pre-Symptomatic SMA Patients Treated With SPINRAZA® (nusinersen) Continue to Demonstrate Sustained Benefit From Treatment | Biogen

investors.biogen.com

The Investor Relations website contains information about Biogen's business for stockholders, potential investors, and financial analysts.

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Cure SMA Canada

1 month ago

Dear members of the SMA community,

As a follow up to your request for SMA clinical study updates and developments, we wanted to sharenew results from the NURTURE study of pre-symptomatic patients with SMA treated with nusinersen (SPINRAZA ™ ) that were presented this month at the international Research & Clinical Care Meeting held
virtually by Cure SMA (USA). The new data include nearly a year of additional follow up for NURTURE study participants – the longest study to date of children with SMA who are treated pre-symptomatically.

Results from this ongoing, Phase 2, open-label study demonstrate sustained benefit for up to 4.8 years with early and continued treatment with SPINRAZA with all participants alive and free of permanent ventilation. The analysis is based on an examination of 25 pre-symptomatic patients with the genetic diagnosis of SMA (most likely to develop SMA Type 1 or 2) who received their first dose of SPINRAZA before six weeks of age.

The study has been extended by an additional three years, enabling Biogen to evaluate the longer-term efficacy and safety of SPINRAZA in patients up to eight years of age and further understand the impact of early treatment.

Additional details regarding the new results from NURTURE study are available here. More information on the NURTURE study (NCT02386553) is available on clinicaltrials.gov. If you have any questions about this data or the NURTURE study, please reach out to a treating SMA physician.

Sincerely,
Biogen Canada

investors.biogen.com/news-releases/news-release-details/new-results-landmark-nurture-study-show-p... ...

New Results From Landmark NURTURE Study Show That Pre-Symptomatic SMA Patients Treated With SPINRAZA® (nusinersen) Continue to Demonstrate Sustained Benefit From Treatment | Biogen

investors.biogen.com

The Investor Relations website contains information about Biogen's business for stockholders, potential investors, and financial analysts.

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