Dear ALS Community,

ALS doesn’t stop. Neither will we.

We understand what a challenging time this may be for people affected by ALS. The COVID-19 pandemic amplifies the many unknowns and the concerns that come with the realities of the disease. We want you to know we are here for you.

Our Regional Managers are reaching out to every person registered with us in Ontario and their caregivers. This one to one contact by phone, email or video conference, is helping to ease the feeling of isolation for the nearly 1,000 people and families we serve. Our Regional Managers are also hearing about the issues people are facing and helping to problem solve and identify solutions. We have also started to launch our virtual support groups so people can have interaction with a larger group, helping to reduce the social isolation.

We are working with our vendors to continue to offer the equipment loan program. We know the progression of ALS doesn’t stop and the pieces of equipment we can provide are even more critical now as they are allowing people to stay more safely in their homes and reducing risk of injury to the person living with ALS and their caregiver.

We are a trusted information resource. We are curating and developing information that is specific to the needs of people living with ALS during the COVID-19 crisis. We are sharing by email, social media, our website and soon we will host a webinar with a panel of experts to answer your questions.

We are convening and facilitating the ALS community. We are bringing together different segments of our ALS community so they can share issues, solutions and collectively problem solve. This includes the ALS clinics throughout Ontario and clinicians across Canada; researchers leading major research projects and labs and younger researchers who are now working remotely. We have been working with our partners in the Federation of ALS Societies across Canada, at the International Alliance of ALS/MND Associations with members around the world, and through the Health Charities Coalition of Canada. Collectively we have been bringing forward emerging issues, sharing our solutions and identifying opportunities for common advocacy initiatives.

We are advocating on emerging issues. As the services of the healthcare sector change on a daily basis, we are identifying emerging issues and advocating to the appropriate parties in support of our areas of mission. We have reached out:

  • To the Ministry of Health’s home and community care branch about long-term equipment use and the need for sustained home and community care
  • To the Ontario Chief Medical Officer of Health requesting community supports for home mechanical ventilation
  • To the Ontario Assistive Devices Program for ongoing access to power wheelchairs and communication devices
  • To the Canadian Institute of Health Research (CIHR) to ask for support for the research community to ensure momentum and talent is not lost

The charitable sector will be challenged during this crisis – with an increased demand for services while fundraising revenues are hit due to the cancellation of significant fundraising events and the negative impact on the incomes and personal investments of donors. In the Economic Response Programs to COVID-19, the Federal and Provincial governments need to recognize the health charity sector and the vital supports being provided to fill the gaps in the healthcare system and address the urgency of the COVID-19 crisis for our communities. We have reached out to:

All of our staff are working remotely using technology to connect and collaborate. We are responding to the evolving crisis and addressing emerging issues while we continue to plan for the future. I am immensely proud and humbled by our team and by our Board of Directors for their dedication to our community and our cause. As an organization, we are determined and inspired by the resiliency of our community and will continue our resolve to work 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.

ALS doesn’t stop. Neither will we.

Tammy Moore
CEO, ALS Society of Canada

Posted in: Advocacy, Update