Meeting an urgent need: Why it’s important now more than ever to give

“ALS doesn’t stop. Neither will we.”

ALS researcher and ALS Canada Board Member Christine Vande Velde said these words at the start of the pandemic in reference to her team’s work in the lab, but they were quickly adopted as a rally cry by ALS Canada and ALS organizations around the globe.

Across Canada, we convened calls with researchers and clinicians so they could learn from one another while responding nimbly to the crisis so that ALS research and care could continue. Across Ontario, people living with ALS attended online support groups and webinars to stay connected and informed as the pandemic landscape changed, almost daily. After more than 18 months of virtual support offerings, recently, we’ve finally been able to have our Community Leads meet people in their homes to assess their needs in-person and help them navigate their paths with ALS.

With the pressures and strain COVID-19 is placing on hospitals and long-term care, our work is more vital than ever.

Why is your gift this year more important than ever?

ALS Canada fills gaps in our healthcare system by providing essential community-based supports and services to some of Ontario’s most vulnerable people. The ALS Canada Equipment Program offers equipment loans to Ontarians living with ALS at no cost to them, our Community Leads help to navigate our complex healthcare system to help people get the care and support they need, and they also develop and facilitate support groups. While we do not provide direct medical care, the supports we do provide can help delay admission to long-term care, reduce emergency room visits, and enhance community-based care.

As a person’s ALS progresses, their reliance on mobility and communications equipment and other assistive devices increases. Over the course of their disease, a person with ALS will transition from needing the support of a walker, to needing a highly customized, powered wheelchair. Access to the right equipment and assistive devices can significantly improve quality of life and help people maintain independence, dignity, and safety.

On the research front, more progress in ALS research has been made in the past decade than the previous century. We are now positioned to find treatments that can significantly alter the course of the disease in the future. The generosity of donors plays a critical role in ALS research in Canada and the greatest limitation standing in the way of effective ALS treatments being developed sooner rather than later is a lack of funding.

ALS Canada’s challenge today is to maintain a necessary level of core funding for research so that we do not lose the critical momentum gained over the past several years, while still meeting the needs of families living with ALS today through comprehensive support and services, and continuing to advocate for policy change federally and provincially within Ontario.

With new and emerging therapies for ALS on the horizon, ALS Canada’s work to advocate for timely, equitable and affordable access to these novel treatments is more important than ever. The ALS community measures time not by months or years, but by loss – loss of function and loss of life. That’s why we have urged Health Canada to grant all ALS therapies priority review status and to expedite the reimbursement process through our ‘Time is Now’ Position Paper. We also believe the federal government has a role to play in funding CAPTURE ALS, a project that will enable Canadian researchers to study why people experience ALS symptoms and progression so differently, which is key to identifying treatment targets, strengthening global clinical trials and developing Canadian infrastructure to attract private sector medical R&D investment. Alongside these priorities, we continue to highlight the realities and needs of people living with ALS so they can be better met by the provincial health care system in Ontario.

What are the most urgent needs for the ALS community, today?

Your support is vital to continue the momentum in research to understand the disease and find treatments that can significantly alter the course of the disease and to ensure that we have the best and brightest researchers in Canada to accelerate progress toward advanced ALS treatment discoveries and to find a cure. ALS Canada is the only dedicated source of funding for ALS research in Canada, and we receive no core funding from government.

As the disease progresses, the average cost of ALS to a family is $150,000 to $200,000, but that figure can be a lot more for some families, who are likely experiencing loss of income as well. Ontarians living with ALS rely on the support of ALS Canada to provide loans of much-needed equipment, free of charge, and financial assistance for people in need to help with the client portion of the government programs that provide access to power wheelchairs and communication devices. The ALS Canada equipment loan pool is entirely reliant on you – our donors.

The weight of an ALS diagnosis is tremendous – physically, psychologically, and financially. ALS Canada engages with officials in the federal and Ontario governments to represent the voices and experiences of people living with ALS. Donor funding supports our advocacy efforts to enact policy changes to provide meaningful impact on the quality of lives of people living with ALS today and in the future by providing equitable, timely, and affordable access to Health Canada approved therapies, improved home and community care, and research.

Your support is so critical for ALS community members. Please make a donation this holiday season to support the critical work and support that our community needs. Because ALS doesn’t stop, and neither will we.

With continued gratitude,

Tammy Moore, CEO

ALS Society of Canada