Cure SMA Canada

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Cure SMA Canada National Charity that funds research for Spinal Muscular Atrophy and supports Canadian Families affected by SMA.

We were founded under the name Families of SMA Canada in the year 2000 by parents of children with SMA to fund research and support Canadian families affected by Spinal Muscular Atrophy.

Thank you to our valued sponsors for supporting the 2026 Cure SMA Camp!
09/21/2026

Thank you to our valued sponsors for supporting the 2026 Cure SMA Camp!

09/21/2026

While advancements in SMA treatments have brought new hope to our community, access remains unequal across Canada. For many, eligibility restrictions continue to stand in the way.

At Cure SMA Canada, we remain committed to advocating for equitable access to treatment for everyone living with SMA.

Please take a moment to watch and share. By sharing this story, you are helping raise awareness, amplify the voices of our community and bring greater attention to the urgent need for equitable access to SMA treatments across Canada. Every share helps ensure that our community’s voices are heard.

Researchers at McGill University are recruiting participants for a study exploring the ethical, legal and social implica...
09/15/2026

Researchers at McGill University are recruiting participants for a study exploring the ethical, legal and social implications of emerging RNA-based therapies, with an important focus on ensuring that the perspectives of rare disease patients and families are represented.

You may be eligible if you:�• Are 18 years of age or older�• Live in Canada�• Have a rare neuromuscular disease, including Spinal Muscular Atrophy, with an RNA therapy currently available or in late-phase clinical trials�• Or are the parent of a child with an eligible rare neuromuscular disease
Participation includes a brief eligibility screening followed by a 30–45 minute virtual interview. Participants will receive $100 CAD upon completion of the interview.

If you’re interested in participating or learning more, please contact at Rose-Marie Séguin: [email protected]

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Des chercheurs de l’Université McGill recrutent des participants pour une étude portant sur les implications éthiques, juridiques et sociales des nouvelles thérapies à base d’ARN, avec une attention particulière à l’importance de représenter les perspectives des patients atteints de maladies rares et de leurs familles.

Vous pourriez être admissible si vous :�• Êtes âgé(e) de 18 ans ou plus�• Résidez au Canada�• Êtes atteint(e) d’une maladie neuromusculaire rare, notamment l’amyotrophie spinale (SMA), pour laquelle une thérapie à base d’ARN est actuellement disponible sur le marché ou fait l’objet d’essais cliniques de phase avancée�• Ou êtes le parent d’un enfant atteint d’une maladie neuromusculaire rare admissible

La participation comprend une courte évaluation d’admissibilité, suivie d’une entrevue virtuelle de 30 à 45 minutes. Les participants recevront une compensation de 100 $ CA à la fin de l’entrevue.

Si vous souhaitez participer ou obtenir plus d’informations, veuillez communiquer avec Rose-Marie Séguin à l’adresse suivante : [email protected]

The Canadian Drug Agency (CDA) is “Re-reviewing” all data for the SMA therapies, Spinraza, Zolgensma and Evrysdi to eva...
09/01/2026

The Canadian Drug Agency (CDA) is “Re-reviewing” all data for the SMA therapies, Spinraza, Zolgensma and Evrysdi to evaluate the value and effectiveness for populations who are still waiting for treatment access.
Canada’s SMA community, the physicians, data, and Real World Evidence all support the value of these treatments. We know through our experience what the effects of this disease are. Because of SMA’s progressive nature, without treatment, patients lose physical strength resulting in more and more dependency on assistive equipment and caregivers. In addition, the inability to access life saving treatment when other countries, Quebec and Saskatchewan are, results in serious decline in mental health.

Cure SMA Canada would like to thank the CDA for going back to relook at the data that continues to support access in other jurisdictions, we all are holding our breath for your recommendation to the provinces.
Your positive recommendation for treatment access for adult patients will give patients the future they deserve, one where they can continue working, experience disease stability and look forward to their future instead of fearing it.

We at Cure SMA Canada would like to thank the ON Ministry of Health - Access division for the invitation to come present...
08/26/2026

We at Cure SMA Canada would like to thank the ON Ministry of Health - Access division for the invitation to come present for an hour on Spinal Muscular Atrophy.

I hope learning more about the disease, its effects on the body and the benefits of treatment helped you to understand the appreciation we feel for the patients who are accessing treatment. I also hope you understand how urgent access is still needed for the patients who are still waiting!

Sincerely,
Susi Vander Wyk on behalf of all of us!

Health data can save lives. Tell your MP why Bill S-5 mattersHealth records should follow patients, wherever they go for...
08/18/2026

Health data can save lives. Tell your MP why Bill S-5 matters

Health records should follow patients, wherever they go for care. Shared information means safer, faster, more coordinated tests and treatments.

Tell your local MP why you support Bill S-5, the Connected Care for Canadians Act, to unlock health information for doctors, patients and caregivers.

Write your letter: https://bit.ly/445Xgrk

Thank you to our generous sponsors of the 2026 Cure SMA Canada Conference!
08/04/2026

Thank you to our generous sponsors of the 2026 Cure SMA Canada Conference!

August is SMA Awareness Month!While we work year-round to raise awareness and funds for SMA, August is our time to shine...
08/01/2026

August is SMA Awareness Month!

While we work year-round to raise awareness and funds for SMA, August is our time to shine a brighter spotlight on the needs, wants, hopes and experiences of our community.

This is an opportunity to spread awareness, educate and support our SMA community.

How to raise awareness:
-Social media post
-Organize a fundraiser
-Develop your knowledge on SMA and how to advocate for the community
-Honour individuals with SMA as well as those that we have lost (candle lighting, light up homes/buildings in purple and orange)
-Make a donation to Cure SMA Canada

What an incredible weekend at the Cure SMA Canada National Conference 💜A heartfelt thank you to everyone who joined us f...
07/26/2026

What an incredible weekend at the Cure SMA Canada National Conference 💜

A heartfelt thank you to everyone who joined us for the 2026 Cure SMA Canada National Conference in Toronto. From the families, to our speakers, volunteers, clinicians, researchers and sponsors, thank you for making this event so meaningful.

Over the past two days, we shared knowledge, built new connections, celebrated progress, and strengthened the incredible SMA community that continues to inspire us every day.

We are so thankful for this community 🧡

Address

#103-7134 Vedder Road
Chilliwack, BC
V2R4G4

Telephone

+18558241277

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