Contact Us

BOARD OF TRUSTEES

ANIELLO CAVALLARO (QC)

JENNA STEWART (ON)

SARAH CHEUNG (BC)

ANGELA MOSCO (AB)

JANIK DIONNE (NB)

SCIENTIFIC ADVISORY BOARD

click here for more information.

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 days ago

REGISTER NOW ✨ www.rebeccarun.com/We are less than 1 month away from the 20th anniversary of the Rebecca Run for SMA and we want you to join us! Time is ticking and we want to ensure you get your fabulous Rebecca Run for SMA race kit before your race day! Register by June 16 to have your kit by Run day! The Rebecca Run for SMA is 100% virtual. What does that mean? It means you can run or walk your race, anywhere in the world, anytime that suits you between July 3 - 17, 2021. We even have a fun run for the kids to take part in! Get the whole family involved. Form a team or do it solo and register today! When you enter the run, your kit includes: an amazing Run shirt, a finisher medal, a $25 Asics e-card, race bib, downloadable finisher certificate, opportunity to share your race results, photos and more! Your kit will be sent directly to you with free domestic shipping! Join us virtually and be a part of our very special 20th Anniversary Run! 🎉 ...

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Cure SMA Canada

2 weeks ago

SMA Camp Registration is now open! 🎉Register: www.eventbrite.com/e/virtual-sma-camp-2021-tickets-145942870053For inquires, contact Holli at smacampwest.curesma@gmail.com ...

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Cure SMA Canada

2 weeks ago

RUN, WALK, OR ROLL ✨The Rebecca Run is a nation wide event that supports SMA Research. Come join or create a team and be part of something that will change the SMA Community! JULY 3 - 17, 2021VIRTUAL EVENTRegister at www.rebeccarun.com/run-registration.html ✅The Rebecca Run has held the position of the main support pillar that Cure SMA Canada continues to stand on. These funds almost exclusively have been utilized for SMA Research. Research projects are incredibly important as we strive to improve the standard of care, quality of life, and longevity of patients affected by SMA. Even with developed treatments, the need for research continues to be essential for continued improvement in understanding the disease and as we search for a cure for Spinal Muscular Atrophy. To be able to support these initiatives, Cure SMA Canada relies on the Rebecca Run fundraiser. With your participation we can ensure this event is a success. We hope to see you there! 🧡💜 ...

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Cure SMA Canada

1 month ago

Roche’s Patient Engagement Opportunities ✨We are sharing an opportunity for patients and caregivers to join Roche to participate in patient engagement activities (above therapeutic areas) like a Patient Council and other working groups to provide feedback on patient support programs, tools, resources development. Visit www.rochecanada.com/en/patient-engagement.html ...

Patient Engagement

www.rochecanada.com

Partnering is a core feature of how Roche delivers impact to the patient communities we serve. We recognize that innovation is taking place all around us but that there are many barriers to optimal patient care, and we welcome opportunities to work together toward the same goal - better outcomes for...

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Cure SMA Canada

2 months 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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