SPACES is a first-of-its-kind musical collaboration created for everyone with a disability by the SMA community. Each creative component of the program – song, music video and album art – was led by someone with SMA. It uses the universal language of music to elevate the many voices of this community and celebrate our individuality

August is Spinal Muscular Atrophy (SMA) Awareness month!

Cure SMA Canada spreads awareness throughout Canada to bring hope to a future where SMA is a curable disease.

 

This year, the CN Tower and the Montreal Tower will be lit up in purple and orange, the Cure SMA Canada colours, on August 19 from 6:30pm until 7:00am August 20, in honour of those living with SMA, and in precious memory of those we have lost. Together we are strong in our commitment to supporting families affected by Spinal Muscular Atrophy.

 

Untreated, SMA is a degenerative neuromuscular disease, causing weakness throughout the body. A person affected by SMA has normal cognitive ability. Lets stand strong together in remembrance of those we have lost to this disease and for those who still wait for access to treatment.

 

Cure SMA Canada is Canada’s national charity supporting families affected by SMA through funding critical research projects, advocacy and support initiatives such as camps, newly diagnosed packages and informational conferences. Cure SMA Canada provides Help for Today and Hope for Tomorrow.

 

Thank you to the Montreal Tower and the CN Tower management teams for supporting Cure SMA Canada to spread awareness for Spinal Muscular Atrophy.

You can view the CN Tower on the live cam https://www.cntower.ca/#earthcam

Better yet! Take a family photo in front of it!! We’d love to see it, bring family and friends!

We are so so proud of the achievements of Sammy Cavallaro!  Congratulations on your award Sammy!  Thank you to the Cavallaro family for your dedication to improving life for people affected by SMA in Canada!

You teach us all to make a change where one is needed.  Very deserving of the award, we are so proud of you!!

A young West Island activist and advocate for disabilities is being awarded the Medal of Honour of the National Assembly.Sammy Cavallaro, who suffers from Spinal Muscular Atrophy, has raised more than $2 million to find a cure for the disease. His advocacy work has lead to major changes for people who suffer from SMA in Quebec. Global’s Gloria Henriquez reports.

 

• Activist Sammy Cavallaro awarded Quebec National Assembly’s Medal of Honour

Dear Canada’s SMA community,

Navigating life with SMA can often be challenging – but also rewarding. As a community, we are always looking to lift one another up and share real stories to ensure families know they are not alone.

That is why we are excited to share a recent launch of a new website and support hub for the SMA community – SMA My Way Canada

SMA My Way Canada is part of a global community. The website offers a platform to learn from and engage with people sharing real and honest experiences, stories and perspectives of those living with SMA, as well as their families, friends, and caregivers.

Stories shared by the website’s contributors cover a number of areas important to our community including accessibility, adulting, relationships, hobbies, parenting and everyday life. You can learn more on the website and from its contributors about:

● Tips and tricks for navigating international travel

● Planning for accessibility changes and challenges in the home as your child grows older

● Breaking down stereotypes surrounding sexual intimacy and relationships for those living with a disability

● The importance of finding ‘me-time’ as a caregiver

And much more!

Cure SMA Canada welcomes this website as a community support tool for all those affected by SMA in Canada. We encourage you to visit SMA My Way Canada to learn more and engage with contributor stories and experiences. We certainly will be!

Sincerely,

Susi Vander Wyk

Executive Director

Cure SMA Canada

Dear SMA community,

We are excited to share the recent launch of a new website for the SMA community – SMA My Way Canada.

 

SMA My Way Canada is part of a global community. The website offers a platform to learn from and engage with people sharing real and honest experiences, stories and perspectives of those living with SMA, as well as their families, friends, and caregivers.

 

The stories featured on the site shared by its contributors covers a variety of areas important to our community including accessibility, adulting, relationships, hobbies, parenting and everyday life. You can learn more from the website’s contributors including tips and tricks for international travel with a power wheelchair, how to create safe spaces for those with disabilities to speak about intimacy and relationships, the importance of finding ‘me-time’ as a caregiver and much more.

 

Cure SMA Canada welcomes this website as a community support tool for all those affected by SMA. Platforms like SMA My Way will help Canada’s SMA community to strengthen its collective voice, one story at a time.

 

Sincerely,

Susi Vander Wyk

Executive Director

Cure SMA Canada

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‘About SMA – Resources’

Useful Links

SMAMyWay.ca – support hub for Canada’s SMA community where contributors share their stories and experiences across a variety of topics including accessibility, adulting, relationships, hobbies, parenting and everyday life.

This video was created with the intention of educating SMA families, and the general public, about the important role bulbar function testing plays in the treatment journey of a child living with SMA. With the help of the Sousa family we were able to convey Chloe’s journey in a fun and innovative way while tackling our goal.

Treatment potential for our pediatric and adult patients!

Dear Canada’s SMA community,

Cure SMA Canada is happy to share that approval has been issued by Health Canada for Risdiplam for SMA patients 2 months of age and older.

Risdiplam is an oral treatment from Roche that treats SMA by increasing the SMN levels. The convenience and benefits of this oral treatment has proven to be life changing for Canadian patients that are already accessing through clinical trials or through Canada’s Expanded Access Program.

Cure SMA Canada looks forward to working with stakeholders to provide justification and support for the various government levels of approval. Our ultimate goal is to ensure that Canada’s SMA patients will have the opportunity to access Risdiplam in a timely manner. Many of Canada’s SMA patients are still living without access to treatment, Risdiplam offers a solution to the unmet need.

We look forward to engaging the SMA community to support our initiatives as we continue our advocacy for access to treatment.

Health Canada’s approval is a wonderful first step on our way to access Risdiplam, we look forward to ensuring Canada’s SMA patients will benefit from this life changing treatment.

Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada