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Letter from the Co-Chairs & Co Founders
​​NEALS began as the Northeast ALS Consortium 30 years ago and has evolved to become the Network for Excellence in ALS (NEALS) which has driven ALS clinical research forward. NEALS has united the community in the effort to overcome amyotrophic lateral sclerosis (ALS). NEALS is now a dynamic network of over 160 ALS centers, people living with ALS, caregivers, researchers, advocacy and government groups and industry partners. Together, we have innovated in clinical trial designs, identified new drug targets, identified key biomarkers and helped lead trials that have led to new ALS treatments. NEALS has been a leader in innovation in clinical trials by improving our statistical approaches, adopting decentralized trial infrastructure, training scores of researchers and study teams, creating collaborations across the ALS community, developing open source data and sample sets, and partnering with hundreds of people living with ALS and their loved ones to focus our efforts on the most important areas of ALS.
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This Impact Report celebrates three decades of milestones, partnerships, and innovations that NEALS has achieved to transform clinical care and treatment of ALS. It highlights our pioneering work in driving innovation to develop new therapies for people living with ALS, building and training new sites to improve access to research for people with ALS, developing and validating new outcome measures to accelerate therapy development, launching global training initiatives to attract and retain new leaders and ALS experts, establishing patient advocacy in research governance, and fostering bold collaboration across academic and clinical sites.
As we reflect on this journey, we honor the dedicated founders, investigators, research participants, and supporters whose collective efforts have shaped the ALS research landscape. Looking forward, NEALS is committed to expanding trial access, deepening partnerships, investing in innovation, and sustaining excellence in research.
We invite you to explore the stories and data within this report to understand the impact of NEALS’ work – and to join us as we continue striving toward a future where ALS is fully understood, successfully treated, and ultimately defeated.
Mission Statement and Values Update
As the landscape of ALS research evolves, it’s essential that our mission and values evolve with it. Our previous mission laid a strong foundation, and this update builds upon that legacy—placing an even greater emphasis on collaboration and inclusivity. By refining our mission, we highlight our commitment to working alongside people living with ALS and all stakeholders in the research community. This evolution reflects our belief that the most meaningful progress arises from collective effort—guided by transparency, excellence, and democratic governance to ensure our work remains both scientifically rigorous and deeply aligned with the priorities of the ALS community.
Our Mission
Our mission is to accelerate the development of new treatments through innovative research and working collaboratively with people living with ALS and all stakeholders in the ALS research community.
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NEALS fulfills this mission by serving as a global leader in academic clinical research, advancing new therapies with speed, innovation, access, and collaboration at the forefront. We unite scientists, clinicians, patients, caregivers, and industry partners to design and support high-quality ALS trials, pioneer new outcome measures and biomarkers, and lead open data-sharing initiatives, accelerating innovation across the field.
Through a range of top-tier educational and training programs, NEALS empowers people across the ALS ecosystem, from those living with ALS and their caregivers, to investigators, study teams, and industry partners, to advance the quality, efficiency, and reach of clinical research.
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For people living with ALS, NEALS offers training and engagement opportunities that foster understanding and advocacy in clinical research. For our member sites, we provide investigator workshops, coordinator trainings, and research forums that strengthen trial readiness and excellence. For industry partners, NEALS convenes Scientific Advisory Board meetings and clinical trial design workshops that bring together leading experts to provide guidance, feedback, and shared learning—helping shape the next generation of ALS trials.
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By connecting the best minds, the most dedicated sites, and the lived ALS experience, NEALS accelerates the pace of discovery and ensures that every person with ALS has access to research and care—close to home and centered on hope.
Our Values
At NEALS, our values underscore a commitment to conducting high-quality ALS clinical research with speed, innovation, and accessibility - always keeping people living with ALS at the center. We believe that the fastest path to progress is one built on openness and collaboration, where every stakeholder, patients, clinicians, scientists, and partners, works together to remove barriers and accelerate discovery.
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Transparency guides this approach: we share data and findings openly, ensuring that collaboration translates into faster, smarter science.
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By integrating the lived ALS experience, we ensure that research priorities reflect what matters most to those directly affected by the disease, improving access to trials and participation.
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Our dedication to excellence drives us to pursue innovation and efficiency in every study, maintaining rigorous peer review and continuous improvement.
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And through democratic governance, we draw on diverse perspectives so that decisions are inclusive, equitable, and responsive to our community.
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Together, these values form the foundation of a network built for speed, access, and innovation; a collaborative engine designed to bring new therapies to people living with ALS as quickly and effectively as possible.