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Letter from the Co-Chairs & Co Founders
For 30 years, the Network of Excellence for ALS (NEALS) has driven ALS clinical research forward and united the community in the effort to overcome amyotrophic lateral sclerosis (ALS). What began as a small consortium of committed clinicians has grown into a dynamic, global network connecting more than 160 academic sites with people living with ALS, caregivers, researchers, advocacy and government organizations, and industry partners – working together to accelerate progress.
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NEALS has helped define how ALS clinical research is conducted. From launching the first NIH-funded ALS clinical trial, to developing outcome measures that remain central to trials today, to pioneering open data sharing and patient-centered research education, NEALS has consistently advanced the field by bringing people together around a shared purpose. Through innovations in trial design, statistical approaches, decentralized infrastructure, biomarker discovery, and investigator training, NEALS has played a central role in accelerating therapy development and strengthening the ALS research ecosystem.
What distinguishes NEALS is not a single program or initiative, but the ecosystem we have built; one that connects investigators, study teams, people living with ALS, caregivers, industry partners, and advocates in a collective pursuit of progress. NEALS does not simply support research; it builds the conditions that allow research to move faster, smarter, and more equitably, while keeping the priorities and lived experience of people with ALS at the center.
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Together, this ecosystem has helped advance innovative clinical trial designs, identify new drug targets and key biomarkers, and contribute to trials that have led to new ALS treatments. NEALS has strengthened collaboration across the ALS community by fostering open science, developing shared data and biospecimen resources, training and supporting study teams worldwide, and partnering with hundreds of people living with ALS and their loved ones to focus research efforts on what matters most.
This impact report reflects on three decades of milestones, partnerships, and innovation that have shaped the ALS research landscape. The sections that follow highlight NEALS’ role in advancing therapy development, expanding access to clinical trials, building and training new research sites, establishing patient advocacy in research governance, launching global education initiatives, and fostering collaboration across academic, clinical, and industry partners.
As we reflect on this journey, we honor the founders, investigators, research participants, and supporters whose collective efforts have driven progress over the past 30 years. Looking ahead, NEALS remains committed to expanding trial access, deepening partnerships, investing in innovation, and sustaining excellence in ALS clinical 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, effectively treated, and ultimately defeated.
Impact Spotlight: Building the ALS Trial Ecosystem
By uniting trial innovation, operational excellence, and training within a single collaborative network, NEALS has helped create the conditions that allow ALS research to move faster, attract investment, and remain centered on people living with ALS.
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.
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.
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.
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.