Actions completed and more action coming!
I would like to update you on some recent activities of Cure SMA Canada.
February 10, 2018 – Montreal – Sammy’s Valentine’s Gala was held to raise funds and awareness for Cure SMA Canada. This gala was supported and attended by representatives from Biogen and AveXis and gave the opportunity to hold meetings with the companies as well. A meeting was also held with members of the health industry.
February 26, 2018 – Toronto – Meetings were held with the pCPA office with Imran Ali, Senior Manager of the pCPA office and 5 of his colleagues to discuss the negotiations and the need for access for all types of SMA to treatment. Thank you to Peter Kelly and Dr. Dowling for attending.
Meetings were also held with the health industry and pharmaceutical companies.
February 28, 2018 – Toronto – Cure SMA Canada and families attended the Rare Disease Day Event with CORD (Canadian Organization for Rare Disorders) at Queens Park. Meeting was held with CORD president Durhane Wong-Rieger to discuss change for needed for the Rare Disease approval process in Canada, and Cure SMA Canada’s part in it. Meeting with MPP’s to discuss working together to bring forth the rare disease community’s needs as well as specifically the SMA community’s needs and how they can support us. Thank you to all that attended!
March 20, 2018 – Ottawa – Cure SMA Canada and families attended the Rare Disease Day Event with CORD at Parliament Hill. A large bus load of supporters joined us from Montreal. Meetings were held with MPPs, speeches were made, media covered our activities, a march and demonstration was held in front of the parliament buildings. Thank you to Durhane Wong-Rieger and CORD for the opportunity, thank you to Jenna & Eddie Stewart, Nicole Lamont, Jason Deegan, Aniello Cavallaro and his family and friends for the help to make this day a success! Thank you to all that attended and shared your stories!
March 21 – 23, 2018 – Ottawa – Cure SMA Canada attended and spoke at the Rare Disease Conference held by CORD. We had the opportunity to speak publicly and privately to multiple levels of government as well as pharmaceutical companies, researchers, clinicians, disease organizations, families, individuals. All with the same message of urgency, “We need access to treatment for all affected by SMA and we need it now.”
Our national petition, “Funding of Spinraza for all Canadian patients affected by SMA” was very successful, it continues to raise a great deal of awareness, and now holds a whopping 38,600 signatures. This petition was effective for referencing to in our meetings, and correspondence. It offered an amazing demonstration in the support our community has as well as the strength we hold. Through this petition, our voice was strong and unified. We still need the continued circulation of this petition, please repost and circulate it again.
What we’ve been working on
Action Day at BC Parliament – to be held in Early May. We need YOU to join us, bring friends and family to support our action. T-shirts and signs will be distributed for impact. If you plan to attend, please email Susi Vander Wyk at curesma@telus.net with your postal code so we can contact your MLA to request a meeting. More information to follow.
Action Day at Alberta Parliament – to be held in Early May. We need YOU to join us, bring friends and family to support our action. T-shirts and signs will be distributed for impact. If you plan to attend, please email Susi Vander Wyk at curesma@telus.net with your postal code so we can contact your MLA to request a meeting. More information to follow.
Meetings meetings, meetings – we have been holding many meetings and have many more planned, advocating for access to treatment for all affected by SMA.
More petitions will be circulated soon, directed to individual provinces to meet the criteria required by each of the provinces to bring action. These petitions will need to be printed and signed by hand, then submitted to your local MPP’s
Keep up the great work everyone! We know we are being heard, our voices are strong, we need to keep it up!
Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada
