COVID-19 AND SMA
Cure SMA Canada recognizes the general and specific concerns associated with the Covid-19 pandemic and how it affects individuals affected by SMA in terms of their health, care and treatment.
We’ve provided an opportunity for questions to be submitted to be answered live by medical experts. We’d like to thank Dr. McMillan, Dr. Katz and the Biogen team for sharing their knowledge with Canada’s SMA community.
We at Cure SMA Canada would like Canada’s SMA community to know we are here to support you through this trying time. Please feel free to reach out if you have more questions, we will do our best to find you the answers you need.
Here is the link to our first in a series of Video conferences.
VIDEO CONFERENCE #1
About Cure SMA Canada
Cure SMA Canada was initiated under the name, “Families of SMA Canada” in August 2000 by a small group of caring Canadian parents who were driven to fund Canadian SMA research. In 2011, the organization evolved, became incorporated and grew. Its mission was restructured to include direct family support in addition to funding Canadian research projects. Our board of trustees increased its representation across Canada.
Since the humble beginnings of 3 families, we have grown to represent families and individuals across Canada. We have funded over $3 million in Canadian SMA research and over half a million in family support. Each year we support Canadians through our newly diagnosed care packages, informational care booklets, equipment pool, SMA camp support, hospital support, end of life support, patient advocacy and many other direct family support services. We are proud to offer these services and fund the critical research projects.
We show our commitment as a sister organization to Cure SMA (USA) in our joint quest for a treatment/cure for SMA and family support. We share more than the name, we collaborate on direction and ideas, we also share the Scientific Advisory Board who receive research applications on our behalf and provide their recommendations on those research projects.
We are dedicated to our members, to the Canadian SMA community and to the future where we will be a part of finding a CURE for SMA!
Support. Research. Hope.
The mission Cure SMA Canada Society is:
- To fund the best possible Canadian research in search of a treatment or cure for Spinal Muscular Atrophy.
- To support Canadian families and individuals affected by Spinal Muscular Atrophy in every province and territory.
- To work closely with CURE SMA (USA) and the Scientific Advisory Board in our selection of recipients of research and trial grant monies.
- To offer and supply information to any Canadian requesting it.
- To support Canadian families and individuals affected by SMA as newly diagnosed, during the affected person’s lifetime and the family after an affected person passes.
- To offer support for activities that bring families and individuals together mutually benefitting all that are involved. (example: the annual SMA conference, SMA Family Camp, Parent’s retreat)
- To support individuals with their fundraising activities benefitting Cure SMA Canada.
- To supply members with newsletters for the purpose of information, connecting and communication.
- To connect families to each other through various methods including our website, social media, through our national office, our newsletter and group activities.
- To help families realize they are not alone with the diagnoses of SMA. That Cure SMA Canada is here for them and will support them in any capacity we can. We understand, because we too are affected by SMA or are parents of children born with Spinal Muscular Atrophy.