Thanks to our engaged community who serve on our Board, Councils and Committees, we are staying informed and we’ve been able to make timely and effective changes to our programs so we can continue to provide community-based support services at a distance.

To help people affected by ALS during the COVID-19 crisis, ALS Canada Regional Managers immediately began reaching out to every family on their caseload. By the end of March, our RMs had connected with 857 of the 865 families we serve in the province of Ontario – 1776 interactions by phone, email, chat or video conference in the month of March alone. Understanding how important support groups are to the mental health of our community, we quickly piloted and started transitioning to utilize technology to bring people together. Since mid-March, 12 virtual support groups have been conducted.

We’ve also pulled together a number of resources below to help people affected by ALS during the COVID-19 crisis stay healthy and informed:

  • Tips and resources to help caregivers stay healthy during times of physical distancing. It’s vital for us to care for those who care for others, so we’ve put together a caregiver wellbeing guidance document filled with tips and resources on how you can stay healthy. Learn how to help relieve stress and improve your wellbeing.
  • Get answers to your questions about the impact of COVID-19 on the ALS community. The International Alliance of ALS/MND Associations hosted a live webinar on April 9th with leading ALS/MND global clinicians and researchers to answer your questions about susceptibility and ALS/MND, care, and the impacts of coronavirus (COVID-19) to research and clinical trials. You can view the webinar recording and transcript online anytime.
  • What you need to know about the impact of COVID-19 on ALS clinical research. The Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) leadership team hosted a webinar on March 27th to address your questions and concerns around clinical and research trials. You can view the archived webinar anytime.
  • Professor develops plain language guide for accessing government aid. If you’re trying to access government support programs during the coronavirus (COVID-19) crisis, Jennifer Robson, a Carleton University professor, has created a plain language guide for Canadians that can help. Learn more about the resource and access the guide through the Ottawa Citizen article that featured her work.

April 3, 6:15 PM ET — In light of the evolving situation with coronavirus (COVID-19) we continue to update the ALS community with the latest information as it relates to what our services, support and events will look like in the coming weeks and months. Because ALS doesn’t stop, neither will we. We are here for the ALS community; your safety is our top priority. Please continue reading for the latest updates.

  • Aligned with the Health Charities Coalition of Canada and other health organizations, we are urging the federal government to pause the implementation of the Patented Medicines Prices Review Board (PMRPB) reforms that are scheduled to take effect on July 1, 2020. We do not want to see any changes implemented until further review and consultation can occur, which would require significant stakeholder engagement – something that is not possible right now because the COVID-19 crisis requires full, sustained and undivided attention. Read our letter.
  • The Walk to End ALS events in Ontario are going virtual! As Canada responds to the COVID-19 pandemic with physical distancing, we’re turning the Walk to End ALS into a fully online event. Although we can’t walk together, we’re all in this together. Register online for your Walk to End ALS today and join us on Global ALS Awareness Day: Sunday, June 21!
  • Earlier this week, ALS Canada CEO Tammy Moore joined CTV News Ottawa to share the challenges that people living with ALS may face due to COVID-19. From the assistive equipment they rely upon to caregiver supports in the home, we do not want to see these resources withdrawn. Watch the interview with CTV News Ottawa now.

March 27, 6:30 PM ET — ALS doesn’t stop. Neither will we. Read an update from ALS Canada CEO Tammy Moore about how we are responding to the COVID-19 pandemic. We are here for the ALS community and are working on multiple fronts to ensure people are safe and supported.

March 17, 9:00 PM ET — We’ll continue to update this page with information and resources to support people affected by ALS during the COVID-19 pandemic. Today we’re pleased to share the following resources:

March 16, 2020 | 8:30 PM ET — Here is an update on actions the ALS Society of Canada is taking to slow the spread of coronavirus and help keep the ALS community safe:

  • Remote visits will be offered by ALS Canada Regional Managers via telephone, email and other virtual means to people living with ALS in Ontario. Home visits are being suspended for the time being.
  • All gatherings of the ALS community are being suspended until the end of April 2020. This includes in-person support groups within Ontario and the ALS Canada Research Forum that was scheduled for April 18 to 20.
  • The Equipment Loan Pool will continue to be available via our community vendor partners. We are working with each of them on their policies and processes to limit exposure. Our priority will be to deliver and repair equipment. We expect there will be delays in picking up equipment.
  • Donated equipment – updated (June 23, 2020):  Please note that due to COVID-19 safety measures, ALS Canada is prioritizing items of the greatest need to our community and is accepting equipment donations again.
  • Walk to End ALS events within Ontario that are taking place after May 1 will be proceeding as scheduled. Extra precautions will be taken on event day to minimize person-to-person contact and reduce the transfer of germs.

Our goal is to ensure the ALS community is well-supported, while limiting opportunities for potential exposure. We will continue to assess all of the above as new information emerges and will provide updates on this page.

For information about services, support and events outside of Ontario, please contact your provincial ALS Society.

Thank you to everyone for continuing to support us, as we support the ALS community and continue to work towards a future without ALS.

March 13, 2020 | 7:35 PM ET — The safety of the ALS community is our top priority. In light of the emerging situation with coronavirus (COVID-19) and actions being taken to contain it, we know that many of you may have questions about what our services, support and events will look like in the coming weeks.

First things first: if you are experiencing symptoms of COVID-19, contact your public health authority immediately.

For our part, we are taking precautions to limit exposure for our community. We have suspended any gatherings of people affected by ALS for at least 30 days. This includes support groups and community meetings. We are also assessing whether adjustments are required to individual interactions – for example, home visits with Regional Managers and the delivery of equipment through our Equipment Loan program – to ensure the ALS community is well-supported, while limiting opportunities for potential exposure. We will provide ongoing updates as they are available through our website and social media channels.

While our office is currently remaining open during regular business hours, the majority of our staff will be working remotely. Due to the disruption in our work environment, responses and regular business could be delayed.

For current information regarding your health and COVID-19:

Thank you to everyone for continuing to support us, as we support the ALS community and continue to work towards a future without ALS.

Editor’s note: The update dated March 16, 2020 in this post has been revised to reflect changes to the status of ALS Canada’s ability to accept equipment donations. 

Posted in: Update