From December 2 to 8, 2024, the ALS Society of Canada (ALS Canada) and the ALS Society of Quebec (ALS Quebec) co-hosted a series of events that brought more than 1,500 delegates from around the world to Montreal to learn and share about advancements that will bring us closer to a world free of ALS/MND. The week saw representation from researchers, healthcare professionals, people living with ALS/MND (pALS), allied professionals and more from over 40 countries.
The week started with the International Alliance of ALS/MND Association’s Annual Alliance Meeting, where a global network of ALS/MND associations from more than 40 countries gathered to share their experiences and learnings from their organizations’ perspectives. Tammy Moore, ALS Canada CEO, and Ilayda Ulgenalp, Manager of Advocacy and Stakeholder Relations, presented the lessons learned on advocacy for treatment access in Canada. They emphasized the need to prioritize early and transparent engagement with stakeholders and centre the needs and voice of patients and caregivers in advocacy efforts. We also heard from Norman MacIsaac and Paula Trefiak, ALS Community Ambassadors and members of the International Alliance’s pALS and cALS Advisory Council about the 2023 Fundamental Rights for People Living with ALS/MND Survey Report. The group also shared that a new community survey will be done in 2025 so look for more on that across our channels when it becomes available.
In the evening, guests were treated to an authentic Quebecois dinner, complete with yellow split pea soup, duck, tourtiere, and sugar pie. They also listened to messages from Canadian singer Celine Dion and Cirque du Soleil’s Michel Laprise about how ALS/MND has touched their lives and the importance of collaboration and connection in keeping up the good fight against ALS/MND.
Following the Alliance Meeting, over 400 nurses, occupational therapists, dietitians, respiratory therapists, social workers, and more were gathered for the Allied Professionals Forum. Members came together to discuss and learn about advancements and challenges in ALS/MND care. A variety of topics were covered – driving and ALS/MND, how people living with ALS can create art, the use of artificial intelligence (AI) for voice banking, and more. Sarah McGuire, Director of Community Services at ALS Canada, alongside Angela Harris, Director of Support Development at MND Scotland, co-presented on a pilot workshop on bereavement with past caregivers who have lost loved ones to ALS/MND.
In addition to hearing from speakers, attendees also got to participate in many innovative demonstrations, including the Day in the Life Suite, where a conference hotel room transformed into an interactive room to show how assistive technology can help people living with ALS across all facets of living, including getting dressed, sleeping, eating, traveling, and communication.
The week ended with the 35th annual International Symposium on ALS/MND organized by the MND Association. The three-day event is the largest annual conference dedicated to ALS/MND and showcases new research in understanding and managing of ALS/MND. The Symposium kicked off with the Stephen Hawking Memorial Lecture by Dr. Tim Caufield who spoke about the rising challenge of misinformation, including in the ALS/MND world. The Symposium included presentations from leading ALS/MND experts, including Canadian Drs. Angela Genge, Sanjay Kalra, and Wendy Johnston.
Many gathered early Saturday morning to hear from Craig Reyenga, a pALS from Canada, about his journey to receiving his ALS diagnosis, and current Canadian research by Dr. Amanda Fiander that uses AI to help break barriers to receiving an ALS/MND diagnosis. Delegates also heard from more than 450 poster presenters on a multitude of ALS/MND-related subjects including genetics, experimental models, biomarkers, and cognitive and psychological support. University of Alberta Master’s student Matthew Harrison took home the Clinical Poster Prize for his poster titled “Detection of Corticospinal Tract Degeneration in ALS at the Individual Level.”
This year also saw the return of the André-DeLambre Symposium in-person after a brief hiatus during the pandemic. In its fifteenth year, the André-DeLambre Symposium brought together 150 participants from 11 countries to hear about the latest discoveries in ALS from researchers, trainees, and poster presenters. Many Canadian ALS clinical trials, as well as CAPTURE ALS, a Canadian initiative that collects data from pALS and healthy controls to provide datasets to researchers, clinicians, and more to help accelerate advancements in ALS treatment.
Canada was well-represented on the world stage as many Canadians presented their innovative research and care practices with delegates across all events. “I’ve been coming to this for more than a decade, and we have probably five to ten times as many Canadians here, learning from others, collaborating with people around the world, and presenting their work as posters and oral talks. It is incredible, it’s so exciting and only going to get better,” said David Taylor, ALS Canada’s Vice-President of Research and Strategic Partnerships.
Canada’s prowess in ALS/MND research was exemplified by Dr. Richard Robitaille winning the Drs. Ayeez and Shelena Lalji & Family ALS Endowed Award for Innovative Healing for his work on understanding the mechanisms underlying neuromuscular junction impairments in ALS.
The partnerships and conversations created during this fruitful week in Montreal hold significant promise for advancing ALS/MND research and improving care and support for people living with ALS/MND and their families. ALS Canada hopes to continue supporting the Canadian and international ALS/MND communities in turning these partnerships and conversations into promising research and practices in 2025 and beyond.