History

The International Alliance of ALS/MND Associations was founded in 1992 by a small group of national ALS/MND associations that shared a common goal: to strengthen support for people living with ALS/MND by working together across borders.

What began as a collaborative network has grown into a global community of more than 80 member associations in over 40 countries. Today, the Alliance connects organizations, healthcare professionals, researchers, people living with ALS/MND, caregivers, and advocates to improve care, advance research, and build a world free of ALS/MND.

How the Alliance Began

Based on recollections by Mavis Gallienne, Wendy Abrams, Rodney Harris, and Peter Cardy (December 2012).

The idea for an international ALS/MND network emerged in 1987–1988, shortly after Peter Cardy became Chief Executive Officer of the MND Association of England, Wales and Northern Ireland.

The Association launched an annual international research meeting — the event that would later become the International Symposium on ALS/MND. Originally titled Who Is Out There Researching Into MND?, the meeting brought together researchers and representatives from ALS/MND organizations around the world.

As these meetings grew, so did conversations about creating an international organization that could connect national associations, strengthen support for people living with ALS/MND, and encourage global research collaboration. Those discussions led to the founding of the International Alliance of ALS/MND Associations.

The Founding of the Alliance

The Alliance was formally established during a meeting held in Solihull, Birmingham, England, from November 4–6, 1992. Representatives from ALS/MND associations agreed to create an international organization dedicated to collaboration, shared learning, advocacy, and research.

Read the Official Notes from the Founding Meeting

Marking 30 Years

In 2022, the Alliance celebrated its 30th anniversary with a video reflecting on its history and the people who helped build the global ALS/MND community.

Growing a Global Community

Over the past three decades, the Alliance has evolved from a network centred on an annual meeting into a year-round global organization supporting collaboration, education, advocacy, and research.

Expanding our global reach

Membership has expanded to more than 80 organizations in over 40 countries, with increasing engagement in Latin America, Africa, South Asia, and other regions where ALS/MND services and research infrastructure continue to develop. Regional collaborations, including ALS Africa and ELATAM, have strengthened local leadership and knowledge sharing.

Creating new opportunities for collaboration

The Alliance has also launched initiatives that bring more voices into the global ALS/MND community. These include the Patient Fellows Program, which supports people living with ALS/MND and caregivers to participate in international research discussions; the Allied Professionals Forum, which connects healthcare professionals worldwide; and the SEED Grant Program, which provides early-stage funding to strengthen ALS/MND research capacity in low- and middle-income countries.

In 2025, the Alliance published the ALS/MND Health Literacy Map, a global framework that identifies the information and support people living with ALS/MND, caregivers, and families need throughout the disease journey. The framework now guides much of the Alliance’s education and communications work.

Guiding our work today

Today, the Alliance continues to unite organizations around a shared vision of a world free of ALS/MND. Its 2026–2028 Strategy focuses on improving quality of life, expanding inclusion, raising global awareness, strengthening research collaboration, building organizational capacity, and growing the international ALS/MND community.

Alliance Chairs

The following individuals have served as Chair of the International Alliance of ALS/MND Associations: