The SMA Resource Guide
Created in partnership with Cure SMA and our Roche SMA Patient Council.
Created in partnership with Cure SMA and our Roche SMA Patient Council.
The following booklets about caring for people with SMA are available in pdf format for download.
They are also available in printed format by calling or emailing the office.
Bursary opportunity for BC residents in post secondary education.
The Lisa Huus Memorial Fund was established in 1988 in memory of Lisa Pauline Huus, who was a third-year sociology student at the University of Victoria. The fund was created by Lisa’s family and has been supported by personal donations in memory of Lisa and by fundraising activities undertaken by the Huus family and the Lisa Huus Memorial Fund.
About the Bursary
The Lisa Huus Memorial Fund provides bursaries up to $5000 annually per recipient, to assist persons with disabilities to undertake or continue their post-secondary education for academic credit at the University of Victoria or other accredited post-secondary institutions in British Columbia.
If you would like support from another parent in similar circumstances, please contact our office so we can match you up. Also, if you are a parent or grandparent who would like to be a peer supporter, please contact us.
The website, www.togetherinsma.ca, is intended to provide Health Care professionals and patients/caregivers with information about SMA, including disease education, SMA care, and tools to support clinical practice.
SMA Community Connections www.smacommunity.org – a portal for connecting with other SMA families
Canadian Neuromuscular Disease Registry
Online directory for expert resources all over North America.
Facebook pages
If you would like to have your Facebook page listed, please email bettylou@curesma.ca.(Canadian families only please)
Other Related Resources
Stella: an SMA story
Cashel Gardner: « I am happy to be me »
These books, videos and resources are recommendations from parents, grandparents and professionals. We hope you can benefit from them. If you have a book you’ve found especially helpful or fun, email Susi at fsmacan@telus.net.
See also: Booklets about SMA produced by FSMAC
Resources about bereavement
Resources for people with disabilities getting into business
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