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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

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 hours ago

Inform Rare is seeking members for its Youth Advisory Group and Parent & Caregiver Advisory Group. These are great opportunities to have your voice heard! Contact informrare@uottawa.ca for more information. ...

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Cure SMA Canada

2 weeks ago

"Without the development and ultimate access to these therapies, the future is frightening for what it holds. Treatment changes that fear to hope and planning for tomorrow."
- Susi Vander Wyk, Executive Director, Cure SMA Canada

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We partnered up with Mediaplanet Canada to foster dialogue between patients, caregivers, and industry leaders around the rare disease landscape in Canada in their Rare Disease campaign. Read the entire campaign in Maclean’s Magazine’s and online www.healthinsight.ca/campaigns/rare-disease-2021/?utm_source=client&utm_medium=social ...

Collaboration Is Key to Success in Rare Disease Research and Development - Health Insight

www.healthinsight.ca

Pharmaceutical researchers are working on treatments for rare diseases in areas like gene therapy, as more than 80% of rare diseases have a genetic origin.

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Cure SMA Canada

2 weeks ago

The Disability Tax Credit or CPP Disability can make a big difference in the lives of disabled Canadians and their families, especially given the current pandemic. These guides will help you navigate this process...

Guide for Disability Tax Credit
disabilitycreditcanada.com/disability-tax-credit-ultimate-resource-guide/

Guide for CPP Disability
disabilitycreditcanada.com/ultimate-cpp-disability-guide/ ...

The Disability Tax Credit Guide | Updated February 2021

disabilitycreditcanada.com

Our 2021 Disability Tax Credit Resource Guide covers up to date info regarding eligibility, application process, T2201 form, and amount received.

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Cure SMA Canada

4 weeks ago

Please participate in the survey about video gaming to help inform the very early design features of an exergaming platform for children and adolescents with SMA.

English: forms.gle/ykwBThjmScuUEJR59

French: forms.gle/w5pF2Qmn4MDgjTRz9 ...

Sondage Exergaming V2

forms.gle

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Cure SMA Canada

1 month ago

WATCH: An Alberta family is hopeful their two-year-old son will be eligible to receive a potentially life-changing treatment. As Tracy Nagai reports, the province announced on Wednesday that children diagnosed with spinal muscular atrophy would be approved to receive Zolgensma on a “case-by-case” basis.

Learn more at:
globalnews.ca/news/7602549/alberta-prescription-drug-announcement-january-27/ ...

Alberta to cover treatment for spinal muscular atrophy on case-by-case basis

globalnews.ca

Zolgensma, a gene therapy medication, was approved by Health Canada in December, however, the standard drug review and negotiating processes are still not complete.

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