International Alliance of ALS/MND Associations Meeting 2024

The International Alliance of ALS/MND Associations held their Annual Meeting in Montreal, Quebec, Canada this December 2-3, 2024 hosted by the ALS Society of Canada and ALS Quebec. The Alliance is comprised of organizations from around the world and this year's meeting had attendees from 33 countries (see photo below!).

The Alliance is comprised of organizations from around the world and this year's meeting had attendees from 33 countries (see photo above!). The ALS Hope Foundation has been a member of the International Alliance of ALS/MND Associations since 2001 and this year Terry Heiman-Patterson, Jamey Piggott and Sara Feldman represented the Foundation in person at the International Alliance of ALS/MND Associations Annual Meeting.

Members of the ALS Hope Foundation PALS Advisory Council attended as members of the Patient Fellows Program, this year hosted by the Alliance. Stacy Lewin Farber (in person) and Todd Kelly (virtually) attended all three international meetings.

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 Michail Christakis and Doug Hill who represented the ALS Hope Foundation.

Watch the March of Faces 2024 video here. 

Program chair and PALS Gudjon Sigurdsson (Iceland), Cathy Cummings (Canada), Executive Director at the International Alliance, and Calaneet Balas (USA), Chair of the Alliance, welcomed everyone and kicked off the presentations from members around the globe. We will highlight a few of these presentations and give you an overview of the meeting below.

The first session was an interactive discussion on common challenges facing many organizations and possible solutions from peers. This support and collaboration idea was seen later when collaboration was the focus of a panel that included members from Argentina, Australia, Belgium, Kenya and the USA. Julia Simon from the Alliance educated us on the Alliance’s Knowledge Management Project, a framework to help set the educational foundation for PALS/CALS. The final product will be available to members to help them to ensure they are covering all areas and help strengthen each member organization.

We heard from several organizations with updates on their work over the past year including social issues facing PALS/CALS in Argentina, PALS led volunteer program in Italy, the cost of ALS/MND in Turkey and the newly formed association in Vietnam.

Technology was the focus of a presentation from Colombia on their Communication and Voice Preservation initiatives, Steve Saling provided a look into the ALS Residences in the US, Taiwan showed us their amazing use of technology in an almost futuristic look, and Jarnail Chudge, Innovation and Technology Advisory Council, discussed the use of AI and the development of the Patients Needs Matrix to ensure the needs and wants of PALS are being heard.  

We heard the voice of people living with ALS/MND and their caregivers woven throughout the two days. The PALS and CALS Advisory Council, or PCAC, Chaired by Sara Feldman (USA) with member Stacy Lewin Farber (PALS/USA) provided an update on the Alliance’s Fundamental Rights Survey.

Paula Trefiak (FALS/Canada), Leah Stavenhagen (PALS/France/USA), Steven Spangenberg (CALS/Australia), Leanne Sklavenitis (PALS/Australia), and Norman MacIsaac (PALS/Canada) took place on the in person panel.

Several organizations shared information on research including an overview of NEALS, FightMND’s research focused fundraising, ALSA’s survey on PALS perspectives on research, an update on International Collaboration from the Alliance, and a panel on Regional Research Updates led by Martina de Majo, the Alliance’s Science Director.

Genetics was the topic of several presentations including the panel pictured, Les Turner shared their online resource focused on Genetic Counseling and Testing, and there was Gene-Specific Education from End the Legacy.

The Path to Pre-symptomatic ALS/MND Trials Panel Discussion with speakers Michael Benatar (USA), Jean Swidler (USA), Stephanie Fradette (USA), and David Taylor (Canada) was the focus on the ALS/MND Connect Session this year. It was live streamed on fb and the link can be found here. 

We are pleased to note that Evy Reviers (Belgium) received the Humanitarian Award for her work with the ALS Liga Belgium, EUPALS, and the International Alliance. Well done!

Many other connections, collaborations and friendships were shared over the two days that we will know will continue throughout the year. #ALSMNDWithoutBorders #AWorldUnitedAgainstALSMND

Check out our Instagram/Facebook reel from the Alliance Meeting here!