Kaysen turns 2! Still time for life-saving gene therapy if Alberta government acts fast!

The Issue

Dear Minister Shandro, I support every Canadian baby having the best chance for life. Time is running out for Kaysen. You are the only person who can make sure he gets Zolgensma gene therapy for treatment of SMA before his second birthday. 

Zolgensma the first gene therapy that could provide a one-time forever treatment for Spinal Muscular Atrophy, a severe life-threatening rare disease. Zolgensma is coming to Canada but not fast enough the drug has to be given before 2 years of age. 

Time is running out for Kaysen, he turns 2 on July 17…

For more information on Kaysen's story please watch this short video: https://youtu.be/CnrVeISn8-c

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.

For more information about Spinal Muscular Atrophy, visit: curesma.ca
 
Please support Kaysen’s fight by signing the petition and send the request to Alberta’s Minister of Health Tyler Shandro.


Thank you for your compassion and support.
 

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Canadian Organization for Rare DisordersPetition StarterCanadian Organization for Rare Disorders CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders Company Overview CORD acts as an umbrella for all rare disorder organizations in Canada so that we can provide a strong common voice to advocate for health policy and healthcare system that work for those with rare disorders. We do not provide any clinical services or counseling.
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This petition had 43,406 supporters

The Issue

Dear Minister Shandro, I support every Canadian baby having the best chance for life. Time is running out for Kaysen. You are the only person who can make sure he gets Zolgensma gene therapy for treatment of SMA before his second birthday. 

Zolgensma the first gene therapy that could provide a one-time forever treatment for Spinal Muscular Atrophy, a severe life-threatening rare disease. Zolgensma is coming to Canada but not fast enough the drug has to be given before 2 years of age. 

Time is running out for Kaysen, he turns 2 on July 17…

For more information on Kaysen's story please watch this short video: https://youtu.be/CnrVeISn8-c

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.

For more information about Spinal Muscular Atrophy, visit: curesma.ca
 
Please support Kaysen’s fight by signing the petition and send the request to Alberta’s Minister of Health Tyler Shandro.


Thank you for your compassion and support.
 

avatar of the starter
Canadian Organization for Rare DisordersPetition StarterCanadian Organization for Rare Disorders CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders Company Overview CORD acts as an umbrella for all rare disorder organizations in Canada so that we can provide a strong common voice to advocate for health policy and healthcare system that work for those with rare disorders. We do not provide any clinical services or counseling.
Media inquiries

The Decision Makers

Alberta’s Minister of Health Tyler Shandro
Alberta’s Minister of Health Tyler Shandro
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Petition created on June 28, 2020