Dear Canada’s SMA Community and our supporters,
Thank you for your continued trust and support as we inch our way through the process of access to treatment here in Canada. We are, and continue to work hard to achieve what we set out to do from the very beginning, to advocate for access for all patients to be eligible for treatment in Canada. As lengthy and frustrating the waiting period has been, we are pulling more and more patients onto the life raft of treatment access.
This battle has been nothing short of exhausting and anxiety ridden for our SMA community. We understand and feel that pressure as well. Cure SMA Canada has attended many conferences and meetings, held focus groups, provided information to decision makers before and during the negotiation process, held press conferences, spoke and presented at conferences, summit meetings, held demonstrations, held letter writing campaigns, video campaigns, petitions, highlighted family stories, met with multiple stakeholders, government officials both federally and provincially from many jurisdictions, pre contact, post contact letters and arrangements. Flew back and forth across this country to advocate for all of our patients. Their needs have been shared in every capacity. We have and will continue to advocate for our patients to receive the only treatment to ever come available for SMA. We know our work is life saving and life changing.
Don’t lose faith if you or your family member hasn’t been approved yet. If you or your family member has been approved, don’t forget the rest of the community that is still waiting, we still need your support! We aren’t done yet, we are still continuing our work/advocacy towards the end goal, access for all!
Lets keep up the momentum!
Susi Vander Wyk
Cure SMA Canada