Overview

Nobody understands better the need to access effective ALS treatments than people 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 created the Canadian ALS Learning Institute (CALI).

Informed by and developed for people affected by ALS, the CALI provides attendees with an online, small-group learning experience to better understand the Canadian ALS landscape, clinical research and therapy development, and how new therapies become approved and accessible to Canadians. Participating in the CALI is an opportunity to learn more about the ALS research process and how to advocate effectively for issues that matter the most to the ALS community, such as equitable and timely access to Health Canada-approved therapies. People who complete the CALI program are considered ALS Canada Community Ambassadors and can participate in opportunities that influence and improve ALS research and advocacy processes.

The next cohort will take place in 2025 across eight modules at the following dates and times:

  • Thursday, January 16 – 1 p.m. – 4 p.m. ET
  • Friday, January 17 – 1 p.m. – 4 p.m. ET
  • Thursday, January 23 – 1 p.m. – 4 p.m. ET
  • Friday, January 24 – 1 p.m. – 4 p.m. ET
  • Thursday, January 30 – 1 p.m. – 4 p.m. ET
  • Friday, January 31 – 1 p.m. – 4 p.m. ET
  • Thursday, February 6 – 1 p.m. – 4 p.m. ET
  • Friday, February 7 – 1 p.m. – 4 p.m. ET

ALS Canada’s Canadian ALS Learning Institute

Applications are now open. The deadline to complete your application is November 18, 2024.

Graduate testimonials

The Canadian ALS Learning Institute was an amazing experience. Meeting other people who are living with ALS and caregivers showed me I was not alone. ALS Canada and all involved in research, fundraising and advocacy are worth their weight in gold. Participating in the institute has lit a fire in me to advocate.

– CALI graduate and ALS Canada Community Ambassador

Top scientific experts shared their experience and expertise on a number of topics related to ALS. They welcomed questions and provided easy to understand answers in a comfortable group setting. It was comforting to hear and actually see ALS researchers working together and sharing information for a common good.

– CALI graduate and ALS Canada Community Ambassador

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

Curriculum Committee

ALS Canada thanks the volunteer committee of researchers, clinicians, and individuals impacted by ALS who support the CALI’s content development to ensure that it is relevant, engaging, and up-to-date.

  • Jennifer Asselin
  • Dr. Wendy Johnston
  • Carolina Jung
  • Dr. Sahara Khademullah
  • Norm Maclsaac
  • Stephanie Psutka
  • Dr. Richard Robitaille
  • Dr. Chantelle Sephton
  • Dr. David Taylor
  • Ilayda Ulgenalp
  • Umayangga Yogalingam

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 Christopher Pon, Vice-President of Fund Development at cpon@als.ca.

You are also welcome to make a donation to ALS Canada. Donations will be leveraged not only for the CALI but also community-based support within Ontario, the ALS Canada Research Program, and federal and Ontario-based advocacy initiatives.

FAQs

Up to 40 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).

There is no fee for selected applicants to participate in the CALI.

Applicants must:

  • Live in Canada
  • Have a personal connection to ALS (i.e. living with the disease or a current or former caregiver to someone living with ALS)
  • Have access to a device with an internet connection and webcam
  • Be available to attend the majority of modules on the dates/times noted

Applications are evaluated by a committee comprised of ALS Canada staff and volunteers, including people living with ALS. Evaluation criteria include availability and commitment to attend modules with an openness to learning. 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 modules may be missed. Depending on the circumstance, participants who miss multiple modules may be asked to withdraw from the program and/or can no longer 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 40 participants who are selected based on application quality.

  • Learn more about the Canadian ALS landscape.
  • Hear from key ALS 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 gain the knowledge and skills required to advocate effectively for issues that matter the most to the ALS community, such as equitable and timely access to Health Canada-approved therapies.
  • Access follow-up opportunities, such as sitting on patient advisory boards, sharing your insights on clinical trial designs with the industry, and participating in consultations that shape the future of ALS research and care, 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, questions for presenters, etc.).
  • Complete an evaluation survey after each module and a final evaluation survey on the entirety of the program to help us make continuous improvements.
  • Track and share your advocacy efforts.
  • Embrace your new role as an ALS Canada Community 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 someone 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 abilities in mind.

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

After completing the program, participants will have the opportunity to attend and participate in regular Community Ambassador meetings hosted by ALS Canada and offered exclusively to graduates of the program. These meetings are a continued opportunity to discuss the latest on ALS research and advocacy and hear from guest speakers on relevant topics.

Yes. All modules and learning materials are made available to participants afterwards for reference. Please note that the program content will only be available to CALI participants, and not the general public.

All content for the Learning Institute is currently delivered in English. We are exploring ways to make content available in other languages.

CALI Lite

ALS Canada acknowledges that not everyone is able to commit to the CALI. To ensure greater access to important and relevant information, we have created CALI Lite, a suite of select, condensed, and evergreen resources based on content presented at the CALI that is available to the public.