2025 International Alliance of ALS/MND Associations Meeting

The International Alliance of ALS/MND Associations held their Annual Meeting in Toronto, Ontario, Canada this November 29-30, 2025 hosted by the ALS Society of Canada and the ALS Association. The Alliance is comprised of organizations from around the world and this year's meeting had attendees from over 30 countries.

The ALS Hope Foundation has been a member of the International Alliance of ALS/MND Associations since 2001 and this year Jamey Piggott, John Furey and Sara Feldman represented the Foundation in person at the International Alliance of ALS/MND Associations Annual Meeting. Terry Heiman-Patterson and Stacy Lewin Farber, a member of the ALS Hope Foundation PALS Advisory Council and an Alliance Patient Fellow, attended virtually.

Jamey Piggott and John Furey presented on the True North Men's Group. In John's words: "Our session generated genuine global enthusiasm. Colleagues from as far as Australia, as close to home as the United States, and many represented countries in between, had sensed a gap in the support available to men living with ALS, but the development of an infrastructure and place where these gentlemen can freely express their concerns and issues among peers with shared experience was scarce."

The programming began with a tribute to people living with ALS/MND around the globe with the March of Faces video.  Special thank you to Bob Spurrier and John Sweeney who represented the ALS Hope Foundation. Mikey Stone and Frankie Torres shared their beautiful song “Losing to the Letters,” for this year’s March of Faces. Mikey, who is living with ALS/MND, and Frankie, who lost her father to the disease, co-wrote and performed the song, and Mikey produced and engineered it. Watch the video here. 

“While support groups are not new, intentionally designing them to address gender-specific emotional needs is still far too rare. The longstanding expectation for men to remain “strong, silent providers” has likely contributed to this apparent yet unmet need going unaddressed. It was energizing to see that our work resonated across cultures and to make connections with teams eager to adopt the True North model for their own communities. As a first-time attendee, I was also struck by the diverse, global perspectives on ALS care, resources, and research. It was a powerful reminder of the collective commitment driving this field forward. I left the meeting inspired and hopeful for meaningful international collaboration ahead.”

Sara Feldman was thanked for her years of service to the International community. She is stepping down this year after six years as the Chair of the PALS and CALS Advisory Council to the International Alliance and eleven years as the Allied Health Professionals Co-chair. Pictured here with Calaneet Balas (USA) and Tammy Moore (Canada). 

Connections, collaborations and friendships were renewed and refreshed. Information was shared over the two days that we will know will influence our work in the future. #ALSMNDWithoutBorders #AWorldUnitedAgainstALSMND