PEOPLE AFFECTED BY ALS RECEIVE THE BEST POSSIBLE STANDARD OF CARE
Evolving support services to adapt to COVID-19

In the wake of the COVID-19 pandemic, our number one priority was to adjust our service model to best serve people and families living with ALS in Ontario. With your ongoing support, we were able to successfully adapt to provide:

  • 12,588 virtual one-on-one meetings: More than ever, the connection with our Regional Managers is critical to people, whether it’s about the progression of their disease or giving emotional support during social isolation. Regional Managers are able to continue to provide support virtually, through video, phone, email and text, in place of in-person visits.

  • 122 video support groups: Knowledge-sharing and peer support is so important to the ALS community because of their evolving physical and emotional needs. Our team continues to host support groups over video to give people living with ALS, their caregivers and loved ones a place to connect with others.

  • 1,345 pieces of equipment delivered: Funding shortfalls and physical distancing measures caused some disruption to ALS Canada’s Equipment Loan Program, but we have been able to innovate and find new ways to give people living with ALS access to the medical equipment and assistive devices they need, to enable them to maintain their dignity, independence and safety.

*All figures from March to October 2020
Ice Bucket Challenge proceeds help fund first Canadian ALS care and management guideline
In November 2020, the first-ever best practice recommendations were published in the Canadian Medical Association Journal. Entitled the Canadian Best Practice Recommendations for the Management of Amyotrophic Lateral Sclerosis (BPRs), this comprehensive resource will guide efforts to ensure people living with ALS in Canada receive the best possible care no matter where they live. The guidelines recommend specialized multidisciplinary care and address issues including timeliness of care, disease-modifying therapies, medical assistance in dying (MAiD), and caregiver support. They will empower people living with ALS in Canada, their families and healthcare providers to make informed, collaborative decisions and advocate for optimal care.

Funding for the guideline was made possible through donations from the 2014 Ice Bucket Challenge and the Canadian ALS Research Network (CALS), a partnership of clinicians across Canada that specialize in ALS research and clinical care. Learn more about the Best Practice Recommendations on our blog.
MORE TREATMENTS ARE AVAILABLE TO IMPROVE QUALITY OF LIFE AND EXTEND LIFESPAN
ALS doesn’t stop – neither can research
In November 2020, ALS Canada announced investment of $650,000 in three new initiatives that will contribute to the development of potential ALS therapies and strengthen ALS clinical care in Canada. The three research initiatives being funded are not only contributing new knowledge to the field, they are also creating tomorrow’s leaders of ALS research and care in Canada by enabling early-career researchers to focus on ALS and gain experience that will strengthen Canada’s expertise in ALS and create greater capacity for clinical trials to be offered here.

Support from donors and partners have made this possible during the COVID-19 pandemic when health research funding is so challenged. You can read about the research funding announcement and award recipients on our blog.
The solution is in you: CAPTURE ALS
When diagnosed with ALS, many people ask “Why me?”, and scientists and researchers haven’t been able to answer this question. A national research initiative called CAPTURE ALS (Comprehensive Analysis Platform to Understand, Remedy and Eliminate ALS) aims to analyze people living with ALS comprehensively using brain imaging, neurological examination, speech analysis, cognitive testing and testing of blood, DNA, and more. With this, we hope to understand why people have different progressions of ALS in efforts to discover an effective treatment or therapy in the future.

Next year, CAPTURE ALS aims to study the first 100 people living with ALS in four clinics across Canada. This is a large-scale initiative was partly funded by the ALS Canada Research Program and supported by monthly donors like you. You are helping researchers develop a more comprehensive understanding of one of the most complex neurodegenerative diseases.
Advocating for access to new drugs for ALS
Access to therapies for Canadian living with ALS is essential – and community advocacy efforts at the provincial level are vital in communicating this urgent unmet need. That is why, in partnership with ALS Societies across Canada, ALS Canada implemented an e-advocacy tool to email each provincial Health Minister to share the need for publicly funded access to this drug without delay. Since this initiative was established in late January 2020, public reimbursement for Radicava has been granted in all provinces except for Newfoundland and Prince Edward Island.
Advocating for swift public reimbursement of Radicava will help lay the groundwork for future therapies making their way through Canada’s drug access pathway. Read more about our efforts on our website.
PEOPLE ARE EMPOWERED TO MAKE INFORMED DECISIONS ABOUT ALS
Increasing awareness of the impact of ALS on Parliament Hill 
In early March 2020, community advocates from across the country joined ALS Canada to bring forward the realities of living with ALS to Members of Parliament and Senators as part of an ALS advocacy day. Our delegation of 35 people, including people living with ALS, caregivers, researchers, clinicians and volunteers, spent two days in Ottawa meeting and educating over 25 federal decision-makers on the urgent need to make Canada’s drug approval pathway faster for ALS therapies; and to provide dedicated funding for ALS research to contribute to the development of those therapies.
Sharing knowledge about ALS virtually
In response to COVID-19, ALS Canada launched a webinar series to address concerns and challenges faced by people and families affected by ALS during the pandemic. Topics covered include, maintaining social distancing, navigating end-of-life, and facing fears during COVID-19. This webinar series has evolved into a regular series with topics such as speech and communication technology and other key topics to educate and inform our community. To view webinars from the series, please visit ALS Canada’s archived playlist on YouTube at www.youtube.ca/ALSCanada.
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