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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

3 weeks ago

Health Canada approves Risdiplam! 🎉 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 and benefits of this oral treatment has proven to be life changing for Canadian patients that are already accessing through clinical trials or through Canada’s Expanded Access Program. Cure SMA Canada looks forward to working with stakeholders to provide justification and support for the various government levels of approval. Our ultimate goal is to ensure that Canada’s SMA patients will have the opportunity to access Risdiplam in a timely manner. Many of Canada’s SMA patients are still living without access to treatment, Risdiplam offers a solution to the unmet need. We look forward to engaging the SMA community to support our initiatives as we continue our advocacy for access to treatment. Health Canada’s approval is a wonderful first step on our way to access Risdiplam, we look forward to ensuring Canada’s SMA patients will benefit from this life changing treatment.Sincerely,Susi Vander WykExecutive DirectorCure SMA Canada ...

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Cure SMA Canada

4 weeks ago

Our SMA Camp theme for 2021 is Canadian Wildlife! 🦌🐻🦫🍁 Stay tuned for more information about SMA Camp or contact us at smacampwest.curesma@gmail.com ...

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Cure SMA Canada

1 month ago

Read the latest community statement from Novartis re: CADTH and Zolgensma. ...

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Cure SMA Canada

1 month ago

We are so excited to hear that Maliyah, 12 years old and living with SMA, has chosen to donate a portion of her Etsy proceeds in April to Cure SMA Canada 🧡 Maliyah has been unable to return to school in-person due to COVID-19. Instead, she has put her focus into selling her creations and donates some of her proceeds to charities that matter to her. Thank you Maliyah for your kind heart and sharing your beautiful creations with us all 💜Check out Maliyah’s store here: www.etsy.com/ca/shop/DoubleMdesigns20 ...

Port Coquitlam girl forced to homeschool due to COVID-19 finds relief through Etsy

www.tricitynews.com

When Maliyah Chung's spinal muscular atrophy prevented her from going to school due to a high risk of serious complications from COVID-19, the girl turned to Etsy to raise money for charity and distract her from the fact she can't see her friends

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Cure SMA Canada

2 months ago

SAVE THE DATE: August 8-15 🎉 ...

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