The NEALS Consortium (NEALS) was founded on a simple but powerful idea: that collaboration – between researchers, clinicians, patients, and advocates – would accelerate progress in ALS research. In 1995, when Dr. Jeremy Shefner and Dr. Merit Cudkowicz co-founded NEALS, the landscape for ALS research looked very different. The field was smaller, resources were more limited, and the idea of large-scale collaboration across clinical sites was still in its early stages. Under their leadership, NEALS expanded from a small group of dedicated investigators into a vast network of (now over 155) clinical trial sites, all united in the mission to advance ALS research and improve patient care.
Hear from NEALS co-founders Dr. Merit Cudkowicz and Dr. Jeremy Shefner in their own words as they reflect on NEALS’ beginnings and enduring mission. (Videos created in partnership with Your ALS Guide.)
• Dr. Merit Cudkowicz
• Dr. Jeremy Shefner
“With so few clinical trials in ALS at the time, we were laying the groundwork for something entirely new,” says Dr. Cudkowicz. “We studied how other networks were structured – how they brought together scientists, clinicians, patients, and disease foundations – and how they developed new investigators. NEALS became a catalyst for sharing ideas, data, and results, ultimately making ALS trials more feasible and impactful.”
From the beginning, NEALS fostered a sense of shared purpose and collaboration. The early gatherings were small and informal bringing together scientists and clinicians to exchange ideas, build connections, and establish a collaborative foundation for ALS research. As NEALS grew, that spirit of collaboration expanded to include a broader community – people living with ALS, caregivers, foundation, government, and industry partners. Dr. Shefner reflects, “We wanted to give people the feeling that they belonged to this organization and had a stake in it.” This inclusivity has remained a core part of the NEALS mission, helping the consortium thrive and remain committed to advancing ALS research.
Today, NEALS remains driven by those same principles: collaboration, transparency, and the relentless pursuit of better treatment options for people with ALS. The NEALS annual meeting has grown into a major event in the ALS research community, not just as a place to discuss scientific advances but as a hub for forging partnerships, launching new clinical trials, and shaping the future of ALS research.
At its core, NEALS is more than just a consortium – it is a professional network that connects ALS research sites across the U.S. and internationally, strengthening collaboration across borders. Each site runs its own clinical trials, but by being part ofNEALS, they gain access to shared expertise, resources, and collaboration that strengthen their work. While sites operate independently, NEALS helps connect the dots – improving trial design, expanding access, and ultimately accelerating research progress. This network of expertise has been a game changer in ALS research.
Dr. Cudkowicz, Executive Director, Massachusetts General Brigham Neuroscience Institute and Director of the Sean M. Healey & AMG Center, has spent her career championing innovative approaches to clinical trials. She has been instrumental in developing platform trials – designed to test multiple therapies simultaneously – which have revolutionized ALS drug development and increased the speed at which promising treatments reach patients. “We all want the same thing – better options for our patients,” she says. “And figuring it out together, how to break down silos and work faster and better together. The principles have been from the beginning: collaboration and sharing whatever we learn and whatever we collect.”
Dr. Shefner, Chief Medical Officer for Clinical Research at Barrow Neurological Institute, has been equally committed to improving clinical trial methodologies and refining the tools used to measure treatment outcomes. His work has influenced the way ALS clinical trials are conducted worldwide, ensuring that research is not only rigorous but also designed to generate meaningful results for patients as quickly as possible.
The impact of NEALS is evident in the breakthroughs that were once considered impossible. Treatments are now emerging that can slow ALS progression, and for someindividuals, even improve strength – unheard of just a few decades ago. Fueled by greater collaboration across research institutions and a new wave of scientific discovery, the outlook for ALS research continues to grow more hopeful.
Yet, both Dr. Shefner and Dr. Cudkowicz remain focused on the future. “We certainly don’t feel like we’ve accomplished our basic mission,” says Dr. Shefner. “So we feel really energized to keep on working on the things that we think are important.” For Dr. Cudkowicz, the vision is clear: “I think NEALS will be here until there’s no need for it anymore.”
What began as a small group of dedicated researchers has evolved into a movement – one fueled by an unyielding commitment to finding treatments and, ultimately, a cure. NEALS is more than a network; it is a driving force in the field, propelled by the contributions ofcountless scientists, clinicians, advocates, and partners. As ALS research continues to advance, NEALS remains at the forefront, fostering collaboration and accelerating progress toward better treatment options. |
