Canadian ALS Learning Institute

Nobody understands better the need to access effective ALS treatments than those who are living with the disease right now. With many promising ALS therapies currently in clinical trials, there is increasing interest from families affected by ALS to learn more about the research landscape and how new therapies become available to Canadians.

That’s why ALS Canada is excited to be launching our inaugural Canadian ALS Learning Institute. Informed by and developed for people affected by ALS, the Learning Institute will provide attendees with an online, small-group learning experience to understand the Canadian ALS landscape, clinical research and therapy development, and how new therapies become approved and accessible to Canadians. Participating in the institute is an opportunity to learn more about the ALS research process and how to advocate effectively for access to Health Canada approved therapies.

The inaugural Canadian ALS Learning Institute kicks off in November 2021. The deadline to apply has now passed. Please watch this space to view the list of successful applicants and for information on future Canadian ALS Learning Institutes.


Working Group

ALS Canada thanks the volunteer working group of people living with ALS who have helped to inform the program content and the application and evaluation processes.

Todd Bertamini, Alberta
Carmen Cels, Ontario
Mike Cels, Ontario
Norman MacIsaac, Quebec
Brad MacKenzie, British Columbia
Cali Orsulak, Manitoba
Paula Trefiak, Saskatchewan

Sponsors

As a donor-funded organization, ALS Canada is actively seeking sponsors at a variety of levels to help cover the expenses associated with offering this program. If you are interested in supporting the Learning Institute as a sponsor, please contact Elissa Beckett, Interim VP Fund Development at ebeckett@als.ca.

You are also welcome to make a donation to ALS Canada. Donations will be leveraged not only for the Learning Institute but also community-based support within Ontario, the ALS Canada Research Program, and advocacy federally as well as provincially within Ontario.

FAQs

Up to 20 spots are available. Households with more than one family member interested in attending must submit a separate application (unless the second attendee is participating only as a support to their loved one living with ALS and not for educational purposes).

Applicants must:

  • Live in Canada
  • Have a personal connection to ALS (i.e. living with the disease or a current or former personal caregiver to someone living with ALS)
  • Have access to a device with internet connection and webcam with the ability to engage via chat functions etc.
  • Be available to attend all modules on the dates/times noted above

Applications are being evaluated by a committee comprised of ALS Canada staff and volunteers, including people living with ALS. Evaluation criteria are as follows:

  • Likelihood to benefit from content (openness to learning, critical thinking) (35%)
  • Generally well-informed on ALS research (15%)
  • Generally well-informed on ALS advocacy (15%)
  • Likelihood to be a positive influencer, leader, change agent (35%)

Additionally, ALS Canada will review applications to ensure a diverse cohort in age, background, and geography.

It is expected that participants will make every effort to be available to attend all of the modules. We understand there may be extenuating circumstances and one module may be missed. Depending on the circumstance, participants who miss multiple sessions may be asked to withdraw from the program and/or no longer have the opportunity to participate in follow-up activities.

Participants will learn more about the Canadian ALS landscape, clinical research and therapy development, how new therapies become approved and accessible to Canadians, and how to advocate effectively for access to approved therapies.

To foster learning and meaningful dialogue, the Learning Institute is limited to 20 participants.

  • Learn more about the Canadian ALS landscape.
  • Hear from some of the researchers deeply invested in understanding ALS and contributing to the development of effective treatments.
  • Connect with other ALS community members with an interest in research and advocacy.
  • Learn more about the ALS research process and how to advocate effectively for access to Health Canada approved therapies.
  • Access follow-up opportunities for ongoing engagement.

Attendees in this program are expected to:

  • Engage in discussion throughout this program and afterward.
  • Come to each module prepared (e.g. reading materials circulated in advance, etc.).
  • Complete an evaluation survey after each module and a final evaluation survey on the entirety of the program to help us improve it.
  • Track your advocacy efforts.
  • Embrace your new role as an ALS Research Ambassador and pledge to advocate for ALS to decision makers.

The program has been developed in consultation with people living with ALS and people caring for those living with ALS. The program includes sessions where people living with ALS will share their experiences and perspectives.

Yes. Participants will have the option to share verbally or use the chat feature to type comments and questions. ALS Canada has developed this program with different verbal abilities in mind.

After completing the program, participants will have the opportunity to:

  • Attend and participate in regular meetings of the PEACe Committee, a group of people from across North America who have completed Module 2, the Clinical Research Learning Institute.
  • Attend and participate in regular meetings hosted by ALS Canada and offered exclusively to people who have completed the program.

Applicants will be notified by email on or before October 15 if they are selected to be a participant for the inaugural Learning Institute. Successful applicants will then be asked to confirm their attendance.

Unsuccessful applicants are encouraged to check here for future programming and reapply.

Yes. All modules will be recorded and made available to participants afterwards for reference.

All content for the Learning Institute is delivered in English.

Please contact info@als.ca with any further questions.