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

COVID has proven we can quickly set up infrastructure without long-term clinical data. It’s time to do the same with rare diseases, says Durhane Wong-Rieger, president and CEO of Canadian Organization for Rare Disorders.
Vanessa Hrvatin,

Feb 28 2022

For Sasha Kirkland, it’s hard to look back over the last decade of her life and not feel discouraged. The 36-year-old lives with type 3 spinal muscular atrophy (SMA), a rare progressive disease that causes muscles to weaken over time. Over the last 10 years her condition has gotten progressively worse; she can no longer walk without assistance and was forced to leave her full-time employment.   

But two years ago, there was a glimmer of hope. Alberta, where Kirkland lives, expanded access to the drug Spinraza — the first drug approved by Health Canada to treat SMA which slows progression of the disease — beyond just those living with type 1 SMA. Although she didn’t meet the new criteria, the province stated that patients not meeting the expanded funding criteria would be considered on a case-by-case basis.  

To date, Kirkland’s neurologist has submitted an application for her to access Spinraza six times but each one has been denied.   

“It feels like a blow to the chest,” says Kirkland. “It makes me feel like my life isn’t worth as much as other people’s, and that my ability to contribute to society isn’t as great, either.”  

Kirkland is one of roughly three million Canadians living with a rare disease, many of whom can’t access treatment. There are several barriers for rare disease patients to access innovative therapies in Canada, including the price tag associated with these drugs, which ranges from $100,000 to more than $2 million per patient each year. This price is too steep for most people to pay out of pocket, leaving the onus on provincial and territorial governments or private insurers to cover the cost. If not, the only way patients can get access is through clinical trials, patient-support programs sponsored by pharmaceutical companies, or Health Canada’s special access program.   

‘Rare disease drug strategy should focus on infrastructure’

This challenge in accessing treatment is what the federal government is looking to address in a   national rare disease drug strategy , backed by a $1 billion proposed budget over two years starting in 2022. President and chief executive officer of the Canadian Organization for Rare Disorders (CORD) Durhane Wong-Rieger says the strategy must focus on building infrastructure that will make it possible for clinical trials to be done effectively and efficiently in Canada so more companies will be inclined to market their products here. Currently, only 60 per cent of treatments for rare diseases make it into Canada, and most get approved up to six years later than in the USA and Europe.  

Another barrier is the health technology assessment a new drug goes through after receiving Health Canada approval, which looks at the drug’s value and overall effectiveness. Many drugs that treat rare diseases are tested in small clinical trials with high uncertainty in terms of which patients they work for and how well they work, so they don’t pass the assessment.  

“This is where we think the biggest change will happen with this rare disease drug strategy,” says Wong-Rieger. “We need to approve these drugs, make them available now, and then have the infrastructure to monitor patients in real time to see how they’re working. The drugs are there and could make a profound difference in peoples’ lives, so we don’t need to wait until we have all the evidence or until we’ve done these big clinical trials.”  

Wong-Rieger points to the roll-out of COVID-19 vaccines — which was coordinated quickly despite not being backed by years of clinical trial data — as exactly what the rare disease space has been advocating for.  

“We got the vaccines and learned they were waning after four months just by studying patients in real time,” she says. “We’re not asking for money to be put toward drugs — that’s a given, just like having the money for vaccines was a given. We need the $1 billion to be invested in setting up clinics, communications and long-term monitoring, just like we’ve seen with COVID.”  

“I can’t say things like, ‘our 10-year anniversary is coming up so let’s save money and go on a trip,’ because I don’t know what life is going to look like for me in 10 years,” says Sasha Kirkland.

Wong-Rieger says the rare disease drug strategy likely won’t consist of a fully fleshed out framework; it needs to be flexible as new infrastructure is put in place and more innovative therapies become available. And if Canada gets it right, she’s hopeful this strategy could act as a blueprint for other diseases.     

“The idea here isn’t let’s just open the doors and make every drug available to everyone,” she says. “We want to make sure the drugs coming in are the right drugs and that they’re going to the right people. We need to have a process in place to ensure they’re coming in at prices and in circumstances that are affordable and sustainable in the long term.”     

Despite the rare disease drug strategy being announced in 2019, CORD developed a broader strategy back in 2015 focused on many aspects of rare diseases, ranging from diagnosis to community support, but it never gained federal attention.

  For Sasha Kirkland whose condition deteriorates a little more each day, expanding access to drugs and support for rare diseases can’t come soon enough.   

“I can’t say things like, ‘Our 10-year anniversary is coming up so let’s save money and go on a trip,’ because I don’t know what life is going to look like for me in 10 years,” she says. “Will I be able to hold my own head up on a plane? Will I even enjoy travelling? I can’t plan for the future. This disease will slowly rob me of absolutely everything.”    

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.