Banner with text "Learning from COVID-19 to strengthen support for Ontarians living with ALS" featuring the ALS Canada and Ontario Trillium Foundation logos.

Toronto, ON – The in-home support that the ALS Society of Canada provides to people living with ALS is highly valued by the community it serves and is something it had to evolve after the pandemic made physical distancing a public health necessity. And to help with the work needed to effect change, earlier this year, the ALS Society of Canada learned that it had received a $73,400 Resilient Communities Fund grant from the Ontario Trillium Foundation (OTF) that will impact its services across the province. The Resilient Communities Fund program was developed by OTF to help the non-profit sector to rebuild and recover from the impact of COVID-19.

“I am pleased to hear about this funding to the ALS Society of Canada, which provides hundreds of Ontarians living with ALS the crucial supports that they desperately need. The COVID-19 pandemic has forced us to look for innovative ways to provide healthcare services, and this funding will ensure that these services are easily accessible for our most vulnerable.” – Chris Glover, MPP for Spadina-Fort York

The year-long grant is helping with the costs of designing a hybrid support and services model informed by the lessons learned through the pandemic, which will enable the ALS Society of Canada to continue to fill gaps in the healthcare system and provide essential supports and services to some of Ontario’s most vulnerable people. In addition, it will help build better organizational infrastructure and help with the costs of providing training for staff and volunteers. The new service delivery model means ALS Canada staff can sustainability provide a blend of in-person and virtual services, leveraging the best of both service formats.

“By adapting the delivery of programs and services to address the evolving reality of COVID-19, we are in a better position to meet the needs of the community,” said Kim Barry, Director, Community Services at ALS Canada. “While we do not provide direct care, the supports we provide help to delay admission to long-term care, reduce unnecessary emergency room visits, and enhance the well-being of the ALS community, all of which are vital to helping people cope with the realities and devastation of an ALS diagnosis.”

ALS is a terminal disease: 80 per cent of people die within two to five years of their diagnosis while facing progressive paralysis, and each person’s progression and needs vary tremendously, making personalized practical and emotional support a critical need. After the COVID-19 pandemic began, it quickly pivoted to a service model that included virtual and remote services in place of the in-person visits and support groups offered to approximately 1,000 families currently living with an ALS diagnosis in Ontario.

In addition to offering services and support to people and families living with ALS within Ontario, ALS Canada works nationally to invest in leading-edge ALS research and engages federally and provincially within Ontario to advocate for system change that will create a future without ALS.

The Ontario Trillium Foundation (OTF) is an agency of the Government of Ontario, and one of Canada’s leading granting foundations. Last year, nearly $112M was invested into 1,384 community projects and partnerships to build healthy and vibrant communities and strengthen the impact of Ontario’s non-profit sector. In 2020/21, OTF supported Ontario’s economic recovery by helping non-profit organizations rebuild and recover from the impacts of COVID-19. Visit otf.ca to learn more.

What is ALS?

ALS, which stands for amyotrophic lateral sclerosis, is a brutal and unforgiving disease with no cure. It gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Approximately 1,000 Canadians are diagnosed with ALS each year and 80 per cent of them die within two to five years.

About the ALS Society of Canada

Founded in 1977, the ALS Society of Canada (ALS Canada) works with the ALS community to improve the lives of people affected by ALS through support, advocacy and investment in research for a future without ALS. We are a registered charity that receives no core government funding – all of our services and research are funded through the generosity of our donors. Through the ALS Canada Research Program, we fund peer-reviewed research grants, foster collaboration and build capacity within Canada’s ALS research community and participate in new areas of research where we are well-positioned to have an impact. Within Ontario, ALS Canada has a role similar to that of the provincial ALS societies providing services and support to help meet the needs of people living with ALS. Through advocacy federally and provincially within Ontario, ALS Canada gives voice to the collective experience of people living with ALS to help drive program and system changes for the ALS community. www.als.ca

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