From November 29 to December 2, the ALS Society of Canada (ALS Canada), The ALS Association, and the International Alliance of ALS/MND Associations co-hosted the global ALS community at the 2025 Alliance Meeting and the annual Allied Professionals Forum (APF). The four days of events brought together hundreds of attendees in-person and virtually from more than 30 countries, including people living with ALS, caregivers, healthcare professionals, researchers, advocates, and representatives from ALS organizations across the globe.
The first two days of the conference saw representatives from ALS organizations and community members come together to share innovative initiatives and ideas at the Alliance Meeting. The meeting started off with a video presentation about ventilators as a tool to improve quality of life from Yohei Yamada, a person living with ALS from Japan and Director at the Japan ALS Association and International Alliance of ALS/MND Associations.
ALS Canada was well-represented at the Alliance Meeting with presentations from Umayangga Yogalingam, Manager, Knowledge Exchange and Community Information on the ALS Canada Children and Youth Resource Hub and Ilayda Ulgenalp, Senior Manager, Advocacy and Stakeholder Relations on the success of the Ontario ALS Provincial Program. Chris Pon, Vice-President, Fund Development, served on a panel with Marcela Santos from Asociación Colombiana de Esclerosis Lateral Amiotrófica (ACELA) to share lessons learned from fundraising on Day 2.
Day 1 concluded with the host dinner themed “An Evening of Gratitude.” The dinner saw Calaneet Balas, CEO and President of The ALS Association and Chair of the International Alliance of ALS/MND Association since 2018, pass the mantle to Tammy Moore, CEO of ALS Canada, who will assume the role as the new Chair. Guests were also moved by a heartfelt speech from 17-year-old Benjamin Webb, son of ALS advocate and ALS Canada Community Ambassador Paula Trefiak. Benjamin shared how Calaneet’s courageous advocacy for a cure has impacted him and his family who are affected by SOD-1-ALS and for which a treatment, Qalsody (tofersen), is available in Canada.
The latter half of the conference included allied professionals ranging from occupational therapists, respiratory therapists, social workers, dietitians, speech-language pathologists, and more, who shared best practices and innovative solutions to improve the quality of life for people living with ALS and their caregivers at the Allied Professionals Forum (APF). Presentations ranged from supporting caregivers in managing behavioural symptoms of ALS to an education program for first responders to death literacy.
Day 1 of the APF ended with a Chopped-style cooking show called Blended where two teams made up of a chef, dietitian, and members of the ALS community compete to prepare a dish that can be enjoyed safely by people living with swallowing difficulties as often seen in people living with ALS. The teams were rated on taste, presentation, and safety by a diverse panel of judges, including Tammy. Both teams came out as winners as one was crowned “best taste” and the other was crowned “most safe.”
The award-winning “Day in the Life of” Suite returned for its second year, transforming a conference room into an immersive maze of assistive technology and tools to help people living with ALS navigate daily life including eating, sleeping, travel, communication, recreation, and intimacy. The suite offered hands-on learning for attendees to better understand the realities of people with ALS while also offering practical insights on solutions for managing daily tasks.
Both meetings highlighted the importance of strategic discussions, knowledge sharing, and the strength of a united global community in accelerating progress toward a world free of ALS and improving the quality of life for people living with the disease today. ALS Canada continues to be committed to transforming ideas and conversations into ideas by leveraging global partnerships and insights to improve the lives of Canadians living with ALS and the international ALS community.
Here are some personal reflections about the meetings from some of our ALS Canada staff: