It’s been 15 years since my cousin Doug, who was like a big brother to me, was diagnosed with ALS. Our options were limited then with only one approved therapy available. We didn’t know what to do and who to turn to as we navigated the bend in the road. Today, when I reflect on developments in the ALS community, I am in awe, and most of all grateful, to the donors who continue to support our mission at ALS Canada.

As the needs of the community change, we as an organization have evolved to meet these needs. I want to share with you a few of the ways your donations help shift the reality of ALS from dying to living through research and early diagnosis, supporting families in their navigation, and advocating for meaningful policy changes.

Supporting early diagnosis

Earlier diagnosis of ALS is critical to better patient and clinical trial outcomes. A new project initiated by ALS Canada, ReferALS, seeks to reduce the time to receive an ALS diagnosis in Canada. This will be done through a set of tools and engagement strategies designed to accelerate patient referrals to neurologists specializing in ALS at Canadian ALS clinics.

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Making headway in research

ALS Canada continues to be the only source of dedicated ALS research funding across Canada. This means your gift allows ALS Canada funded researchers to continue striving to better understand ALS, and identify treatments that will alter the course of the disease. 

CAPTURE ALS, a national research platform made possible with the support of ALS Canada’s donors, recruited its first participant earlier this year. The project has multiple sites across Canada engaging fundamental and clinical researchers in the hunt for answers to why ALS is different in each person. This is the crucial question that will help unlock new therapeutic targets, treatment options and lead us closer to personalized medicine.

Pushing forward our advocacy efforts

ALS Canada engages with officials in the federal and Ontario governments to represent the voices and experiences of people living with ALS. With your help, ALS Canada continues to advocate for policy changes that will have a meaningful impact through equitable, timely, and affordable access to therapies, improved home and community care, and research funding.

Our Time is Now position paper was developed with stakeholders from the ALS ecosystem and we see how Health Canada, pCPA, and companies have responded. Your gifts enable ALS Canada to continue advocating to improve access to Health Canada approved therapies.

This past June, it was announced that Canada is the first country in the world to give the regulatory green light to the drug ALBRIOZA as a treatment for ALS. Health Canada’s approval is a positive step forward in the available treatment options for people living with ALS, and we are now working to make sure that every Canadian will have equitable and timely access within their province or territory.

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Strengthening knowledge exchange and community support

Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, ALS Canada empowers Canadians affected by the disease to navigate its current realities, be informed consumers of ALS information, and advocate effectively for change.  

ALS Canada’s Canadian ALS Learning Institute (CALI) has cultivated incredibly engaged and empowered Community Ambassadors. The CALI program was launched in 2021 to inform people affected by ALS from across Canada about the Canadian ALS landscape, clinical research, and therapy development. Graduates of the CALI 2021 program continue to meet regularly, with nearly all participants still actively contributing to our advocacy and engagement efforts with government and industry. The second cohort was selected through an application process to participate in a series of learning modules this fall.

We want to see the reality of ALS change from dying to living with ALS. The current reality necessitates that families have access to a Community Lead in their region who can help them navigate the Ontario health system and access equipment at no cost to them. Over the course of a person’s disease progression, they could transition from needing the support of a walker, to needing a highly customized, powered wheelchair that can support a person living with a more advanced state of the disease. Access to the right equipment and assistive devices can help people maintain independence, dignity, and safety. The ALS Canada Equipment Program is entirely reliant on donor funding and your generosity sustains people’s quality of life.

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I want to thank you for taking the time to learn about what we are doing to meet the urgent needs of the ALS community. The holidays are a time to come together, and I hope you will take the opportunity to support families grappling with ALS during this festive but often difficult time.

Together, we can make a difference to families living with this disease today, and tomorrow. I invite you to make a donation today to sustain our efforts to realize a future without ALS.

With continued gratitude,

Tammy Moore
CEO, ALS Society of Canada