Our Story: From Vision to Network
In 1995, in the wake of the first SOD1 gene discovery that forever changed the understanding of ALS, a small group of New England researchers met to discuss how to bring new therapies to patients faster. Their idea was simple yet revolutionary: collaboration could overcome the barriers that slowed clinical research.
That conversation became NEALS.
Guided by neurologist Dr. Ted Munsat, then Chair of the World Federation of Neurology, and inspired by pioneering ALS investigators such as Dr. Merit Cudkowicz, Dr. Jeremy Shefner, and Dr. Robert Brown, the group sought to unite academic centers that were eager to share ideas, train investigators, and build better trials for people living with ALS.
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The founding sites, including Massachusetts General Hospital, Barrow Neurological Institute, and other leading New England and Mid-Atlantic centers, laid the groundwork for what would become a model of scientific collaboration. Their shared goal was not only to conduct rigorous research, but to create a sustainable infrastructure for education, data sharing, and trial readiness across the ALS field.
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The group’s first NIH-funded clinical trial launched in 1999, marking the first time NIH had ever funded a trial in ALS. From those early roots, NEALS quickly grew into an academic powerhouse developing standards, outcome measures, and open data practices that became the foundation of modern ALS research.
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Over thirty years, NEALS has become synonymous with excellence, partnership, and progress. What began as a handful of dedicated sites is now a global network of more than 165 academic research centers across the U.S., Canada, Europe, and beyond - all committed to advancing ALS treatments and improving patient care.
