Dear Cure SMA Canada Community,
Cure SMA Canada has been working feverishly in our fight for broad access to treatment.
A short but important update in these meetings and activities:
- The Pan Canadian Pharmaceutical Alliance (pCPA) has moved Spinraza to the list of drug products that are under active negotiation. Now is the right time for this petition and we will react to this move to negotiation with strength. A petition has been prepared in response to this announcement and will be launched in the next few days. **This is very important! When you receive the link to this petition, it is extremely crucial that we circulate it swiftly and widely within Canada. Instructions will be accompanying the petition to make it easy to understand, follow and execute.
- Susi Vander Wyk will be meeting with the pCPA and members of the medical community in Toronto on February 26 to discuss the importance of access for all types of SMA as they move into negotiation.
- Cure SMA Canada invites all local Ontario members of the SMA Community to join Susi Vander Wyk at Queenspark, Toronto on February 28 where we will join CORD to present the needs of the rare disease community as well as the need for access to treatment for SMA to members of parliament. Please contact Susi Vander Wyk at curesma@telus.net to receive registration information.
- Cure SMA Canada invites all families that are able to join us at a patient’s day at Parliament Hill in Ottawa on March 20. This will be a gathering of rare disease patients and families, CORD and our SMA families to meet with individual MPs to share our concerns and stories. Please contact Susi Vander Wyk at curesma@telus.net to receive registration information.
- Continue to share your videos, pictures and stories on the facebook page: Cure SMA Canada – Fighting for Treatment. This page is being accessed by decision makers, the medical community, drug companies and media!! We need your continued presence and voice!
- Cure SMA Canada has had multiple meetings with decision makers, health industry and drug company. Our desire is to be heard in our quest to have all Canadian SMA patients receive treatment. We support these negotiations, HOWEVER we demand to be heard that these negotiations must be inclusive to all types of SMA!
- Cure SMA Canada is organizing an SMA Parliament Action day in Victoria. All BC families are asked to attend! Stay tuned for more information! This event will likely be happening in March.
- Most importantly! Remember that we must remain united in this journey! Together, under the umbrella of Cure SMA Canada we have a stronger voice! Lets continue to work together, we have heard from multiple sources that what we are doing is being noticed and is having an impact!! Great job everyone! Lets keep it up!
Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada
