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Changing the Reality of Living with ALS Through Research and Advocacy

Claudette Sturk with family
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Claudette Sturk with family
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An unrelenting disease meets grit and determination from the ALS community.

An ALS diagnosis is devastating. The harsh realities of the disease reinforce the need for innovative research and a stronger Canadian health-care system. But Claudette Sturk, diagnosed with ALS in 2020, won’t let those harsh realities stop her.

Claudette found empowerment through the ALS Society of Canada’s Canadian ALS Learning Institute, learning about research and how to effectively raise her voice for the ALS community.

Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease), a fatal neurodegenerative disease, results in progressive paralysis and, eventually, the loss of the ability to move, speak, and breathe. Approximately 3,000 Canadians live with ALS, many of whom die within two to five years of diagnosis. To change this reality, the ALS Society of Canada funds research across the country and advocates for equitable, affordable, and timely access to proven therapies.

ALS society spreading hope

Advocating for the approval and drug access processes to be sped up is crucial.

Given how quickly ALS can progress, there’s a narrow window of time to slow it down with approved treatments. Long drug approval processes ­— some taking more than three years ­— further complicate this in Canada.

“Advocating for the approval and drug access processes to be sped up is crucial,” says Claudette. The ALS Society of Canada supports the ALS community by giving them the tools they need to urge decision-makers to work together to remove barriers to access.

“With help from the ALS Society of Canada, people living with ALS can become foot soldiers making real change,” says Claudette.

ALS society spreading hope
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