For 30 years, NEALS has brought together a global community committed to advancing ALS research and care. This report reflects the collective progress made through collaboration, shared knowledge, and an unwavering focus on improving the lives of people affected by ALS.
Network of Excellence for ALS (NEALS)
FROM HOPE TO IMPACT
30 Years of NEALS Leadership in Advancing ALS Research Through Collaboration, Community, Education, Science and Innovation.
http://www.neals.org
Table of Contents
4 6 7 8
Letter from the Co-Chairs
Our Mission
Our Story: From Vision to Network
Redefining Excellence Through Collaboration
10 11 12 15 16 17 18 19 20 21 21 22 23 24 25 26 31
Innovation and Leadership in ALS Clinical Trials
Championing Open Science and Data Sharing
Building a Community: Gathering the Field to Drive Progress
Training People Who Power Progress
Centering the ALS Community in Research
Expanding Knowledge Through Community Webinars
Supporting Research Growth
Driving Trial Success Through Operational Excellence
Member Academic Sites: A Network Built for Excellence
Advancing Science & Treatment
Innovating Care & Community Engagement
Member Sites Powering Innovation in ALS Trials
Partnering Opportunities with NEALS
Looking Ahead
Acknowledgements & Appreciation
NEALS Executive Committee, Scientific Advisory Board, Executive Operations
Get in Touch with NEALS
Letter from the Co-Chairs
For 30 years, the Network of Excellence for ALS (NEALS) has driven ALS clinical research forward and united the community in the effort to advance understanding and treatment of amyotrophic lateral sclerosis (ALS). What began as a small consortium of committed clinicians and scientists grew 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.
NEALS 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 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 leading role in accelerating therapy development and expanding the capacity and coordination of ALS research.
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What distinguishes NEALS is not a single program or initiative, but the ecosystem we 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. Together, this network advanced innovative clinical trial designs, identified new drug targets and key biomarkers, and contributed to trials that have led to new ALS treatments. NEALS strengthened collaboration across the global 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.
NICHOLAS MARAGAKIS, MD CO-CHAIR Nicholas Maragakis
JINSY ANDREWS, MD, MSC CO-CHAIR Jinsy Andrews
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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, working to advance 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 build understanding of and support for clinical research. For our member sites, we provide investigator workshops, clinical research staff trainings, outcome measures 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 leading researchers, dedicated clinical sites, and people living with ALS, NEALS works to accelerate discovery and expand access to research.
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Our Story: From Vision to Network
In 1995, in the wake of the first gene discovery of mutations in SOD1 as a cause of ALS 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
The founding sites, including Massachusetts General Hospital , Brigham & Woman’s Hospital , University of Connecticut , Yale University , Brown University , Tufts University , and the Lahey Clinic , 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.
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.
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.
Over thirty years, NEALS has become synonymous with excellence, partnership, and progress.
Redefining Excellence Through Collaboration
From its earliest days, NEALS recognized that advancing ALS research required more than individual breakthroughs; it required shared standards, trained teams, and trust across institutions. NEALS Investigators plated a central role in developing and validating many of the outcome measures that define ALS clinical trials today. By standardizing how disease progression is measured, NEALS helped ensure that trials could be compared, replicated, and improved— raising the quality of research across the field. NEALS also established one of the first academic Clinical Research Organizations (CROs) dedicated to ALS. This model provided centralized coordination, quality oversight, and operational expertise – supporting NEALS- affiliated trials while also training other research networks and CROs. In doing so, NEALS helped elevate trial execution standards far beyond its own studies. Through clinical trial design workshops, cross- disciplinary committees, and investigator member forums, NEALS has created a culture where ideas are shared early, challenges are addressed collectively, and innovation is accelerated through collaboration rather than competition.
Building the Modern ALS Trial Infrastructure Many of the practices now considered essential to ALS clinical trials – standardized outcomes, trained evaluators, shared protocols – were pioneered, tested, or scaled through NEALS.
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By the Numbers
Members Trained 3000+
NEALS Affiliated Trials 80+ 50+ Interventional
Drugs to Market
Including 11 Non US & Canada Sites 160+ Member Sites
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Open-Source Data Sharing
ALS Clinical Trial Participants in PRO-ACT 28,000+
Biorepository Samples Shared 177,965 3,585 Participants; 100,000+ Cryovials
Leading Breakthroughs in ALS
FDA Approved Therapies
Innovative Platform Trial and Other Trial Innovations
Shared Patient- Based Resources NEALS Biorepository PRO-ACT
Collaborative Consortia
Relyvrio Nuedexta Tofersen
ALL ALS Consortium
HEALEY ALS Platform Trial HEALEY ALS MyMatch Trial
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Innovation and Leadership in ALS Trials
NEALS has built far more than a research network—it has created a collaborative learning ecosystem that brings together clinicians, researchers, people living with ALS, and advocates to drive excellence in ALS clinical trials.
From the outset, NEALS functioned as a clinical trial network , advancing innovation in how ALS trials are designed, conducted, and evaluated. The network has supported a broad range of study designs – including early-phase studies; Phase 1, 2, and 3 trials; adaptive and platform trials; and novel approaches such as ALS MyMatch – expanding access while improving efficiency and scientific rigor. NEALS investigators helped shape the development and implementation of expanded access programs, helping to ensure investigational therapies can be responsibly offered outside of trials while informing future research. NEALS investigators have played a central role in developing and validating trial designs and outcome measures that now define
high-quality ALS research. At the same time, NEALS invested heavily in trial conduct and site readiness , training investigators, coordinators, and evaluators to ensure consistency, accuracy, and excellence across the network. This integrated approach – innovative design paired with rigorous execution – helped make ALS an increasingly attractive field for pharmaceutical and biotechnology partners . As the science of ALS has advanced and more therapeutic candidates have entered development, NEALS has ensured that the infrastructure exists to test them efficiently and thoughtfully, with the patient voice embedded throughout the process . NEALS cultivated expertise by attracting and training leading biostatisticians and trialists , strengthening collaboration between quantitative experts and clinical investigators. Through workshops, mentorship, and formal training programs, NEALS fosters continuous learning and shared problem-solving across the ALS research community.
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Championing Open Science and Data Sharing
Long before open science became a guiding principle across biomedical research, NEALS recognized that data sharing could dramatically accelerate discovery .
A defining example is PRO-ACT (Pooled Resource Open-Access ALS Clinical Trials) —the world’s largest open-access ALS clinical trial database. Developed with partners including Prize4Life, the ALS Therapy Development Institute, and Mass General Hospital, PRO-ACT transformed how ALS data could be used, allowing researchers worldwide to test hypotheses, identify trends, and develop models without launching new trials.
A Multiplier Effect
By making data and biospecimens broadly accessible, NEALS has amplified the impact of trials that contribute to shared repositories—enabling discoveries far beyond the studies it directly supports
Complementing PRO-ACT, the NEALS Biorepository established standardized protocols for biospecimen collection and sharing, ensuring quality, reproducibility, and broad access. Established in partnership with the ALS Association, Project ALS, and funded in part by NIH grants, philanthropy, and Sanofi, the NEALS Biorepository was one of the first centralized biosample resources dedicated to ALS clinical research. It enables researchers to contribute and access high-quality, well-characterized biosamples, accelerating biomarker discovery, mechanistic insights, and biologically informed trial design.
NEALS Biorepository Key Features Centralized, standardized protocols for collection, processing, and storage
Available to qualified investigators through a transparent application process Supports exploratory and confirmatory biomarker work , including fluid and genetic biomarkers Integrates with clinical trial design and analysis to support biologically driven endpoints.
Together, these resources shifted ALS research from isolated datasets to a shared global research ecosystem.
Visit the NEALS Sample Repository page to learn more about the sample request process: https://neals.org/als-researchers/neals-sample-repository
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Building a Community: Gathering the Field to Drive Progress
NEALS Serves as a Central Hub for Collaboration, Education, Innovation, and Sharing Information
As a cornerstone of this effort, the Annual NEALS Meeting is a multidisciplinary forum where clinical insights, research findings, and community priorities converge. The Annual NEALS Meeting brings together researchers, clinicians, industry partners, ALS organizations, government partners, people living with ALS, and advocates to share knowledge and drive innovation. With a focus on member initiatives and therapy development, the meeting prepares attendees for upcoming clinical trials and fosters collaboration among the ALS community .
In-Person & Virtual Attendees including, clinicians, industry leaders, government and foundation partners, and individuals with lived ALS experience
1000+
Abstracts annually now published in Muscle & Nerve, showcasing cutting-edge ALS research 200+
Annual Meetings held to date 24
Visit the NEALS meeting website to learn more about the annual meeting: www.meeting.neals.org
The NEALS Workshop on Advancing ALS Clinical Trials is a focused forum designed for biotech and pharmaceutical companies developing new ALS therapies. The workshop brings together industry partners and leading ALS clinical trial experts to explore the scientific and practical challenges involved in bringing potential treatments from the laboratory into human studies.
Focus areas include critical topics shaping ALS trials, including discussions that
Examine how discoveries in the laboratory translate into clinical trials and what evidence is needed before testing therapies in people. Explore how biological markers can help researchers better understand disease progression and measure whether a treatment is working. Evaluate how ALS trials are designed , how results are analyzed , and how researchers determine whether a treatment provides meaningful benefit . Demonstrate how improvement or slowing of disease progression is measured and what outcomes matter most for people living with ALS .
Explore partnerships and innovative funding approaches that help bring new therapies into clinical testing.
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Our Work in Action
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Training the People who Power Progress
Infrastructure Alone Does Not Move Science Forward, People Do.
By training thousands of professionals , NEALS has built durable capacity, strengthening not just individual trials, but the ALS research workforce itself. In 2009, NEALS launched its first Principal Investigator Training Course , preparing emerging leaders to design and lead high-quality ALS trials. Over time, this commitment expanded to include coordinators, evaluators, and multidisciplinary study teams. Today, NEALS offers top-tier educational and training programs that strengthen trial readiness, promote best practices, and support continuous learning across the ALS research community. Through programs including the Clinical Research Staff Training & Development Workshop , Outcome Measures Training , Investigator Trainings, and hands-on, topical sessions – such as multidisciplinary workshops and CME-
NEALS aims to ensure that innovation is not confined to a single institution, but shared across the network – raising the quality of ALS clinical research and care worldwide.
Interested in Learning More? Visit:
accredited trainings – NEALS equips both early- career and experienced teams with the expertise needed to conduct rigorous, patient-centered research.
https://neals.org/als- researchers/become-a-neals-member
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By embedding patient and caregiver voices into education, advisory structures, and trial design, NEALS has helped align scientific rigor with lived experience— strengthening relevance, trust, and impact across ALS research.
Centering the ALS Community in Research
In 2011, NEALS formalized this commitment with the launch of the ALS Clinical Research Learning Institute® (CRLI) under the leadership of Dr. Richard Bedlack and Dr. Merit Cudkowicz. Designed as a two-day educational program, CRLI equips individuals impacted by ALS with a deeper understanding of clinical research and the therapy development process. Participants learn about study design, how to critically read and interpret research , ethical considerations, and opportunities for community engagement, preparing them to
engage confidently and thoughtfully in research conversations.
Through the PCAC, individuals living with ALS and caregivers provide direct input to the NEALS Executive Committee on research priorities and community needs, ensuring that NEALS’ work remains grounded in real-world experience and aligned with what matters most to the ALS community. Along with the PCAC, the Clinical Trial Liaison strengthens this connection by supporting individuals and families as they navigate research opportunities and resources; helping connect people living with ALS to trials, education, and support across the network.
Graduates of the CRLI program become ALS Research Ambassadors , applying this knowledge well beyond the classroom. To date, hundreds of Ambassadors have gone on to serve on advisory boards, research panels, and committees – working alongside investigators to shape trial design, feasibility, and priorities across the ALS research landscape. This commitment to partnership is further reflected through the NEALS Patient and Caregiver Advisory Council (PCAC) .
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Expanding Knowledge Through Community Webinars
NEALS was among the first organizations to launch a sustained, community-focused ALS webinar series, an effort that has now reached the community through educational sessions.
In partnership with the ALS Association , NEALS connects clinicians, researchers, people living with ALS, caregivers, and advocates through ongoing webinars designed to inform, engage, and empower participants. These sessions share timely updates on ALS research, clinical trials, standards of care, and emerging therapies, reinforcing NEALS’ role as a trusted convener and knowledge hub for the ALS community.
Community Webinars to Date 75 +
View recent NEALS webinars and register for upcoming topics
https://neals.org/people- living-with-als/educational- webinars/
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Supporting Research Growth Through Funding Awareness & Recognition
NEALS is dedicated to fostering the future of ALS research by actively sharing funding opportunities and resources with its member network. The Network plays a vital role in disseminating information about grants, pilot study funding, and infrastructure support available from foundations, government agencies, and industry partners. Additionally, NEALS recognizes emerging research excellence by awarding abstract prizes at its annual meeting, encouraging innovation and highlighting exceptional research. By bridging funding bodies, investigators, and the ALS community, NEALS helps ensure that innovative ideas and researchers receive the support they need to advance the field . This commitment nurtures a continuous pipeline .
Discover Funding Opportunities https://neals.org/als- researchers/upcoming-research- opportunities/
Learn About NEALS Abstract Awards https://meeting.neals.org/poster-abstract-info
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Driving Trial Success Through Operational Excellence NEALS has developed the operational backbone needed to support high-quality, multisite clinical trials across the ALS research landscape. In collaboration with leading academic institutions, the network provides infrastructure for every stage of the trial process — from study design and site selection to outcome measurement and data coordination . As a leader in defining excellence in ALS clinical trials, NEALS has played an instrumental role in validating and standardizing the administration and scoring of the ALS Functional Rating Scale– Revised (ALSFRS-R). By promoting consistent protocols across trial sites, NEALS has strengthened reliability, accuracy, and credibility in ALS research. Its commitment to data sharing and cross-trial comparability continues to accelerate insights across the broader research community.
Through its academic hubs and centralized coordination, NEALS clinical trial cores at MGH and BNI have supported hundreds of trials, from pilot studies to late-phase and platform trials.
Clinical & Data Coordination Center (MGH NCRI) The Neurological Clinical Research Institute at Massachusetts General Hospital (MGH NCRI) is an academic clinical research organization that acts as the NEALS Clinical & Data Coordination Center. MGH NCRI may provide NEALS studies with trial design, protocol development, project management, data management, EDC systems, site selection &management, vendor management, contract & financial management and central IRB services.
Outcomes & Monitoring Center (Barrow Neurological Institute) Barrow Neurological Institute acts as the NEALS Outcomes & Monitoring Center. Barrow provides NEALS sites with training on ALS outcome measures. In addition, Barrow employs and trains NEALS site monitors who conduct site and pharmacy monitoring for trials.
For More Information, Please Contact: krdrake@mgh.harvard.edu
For More Information, Please Contact: gale.kittle@commonspirit.org
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NEALS is powered by its member sites – academic institutions across the world that bring research to life, lead clinical trials, and innovate in ALS care every day. Together, these sites form the engine of ALS clinical research – NEALS members have led pivotal trials, developed biomarkers, expanded trial access, and trained the next generation of ALS researchers. From major research universities to community-based centers, NEALS members bring deep expertise, local relationships, and a shared commitment to advancing research . NEALS includes more than 160 academic research sites across North America and beyond, with several international collaborators in Turkey, Japan, Australia, Italy, Israel, Chile, and India.
A Network Built for Excellence MEMBER ACADEMIC SITES
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Advancing Science and Treatment Innovation
NEALS member sites have collectively led and contributed to hundreds of ALS clinical trials, paving the way for new therapies and care models. Their involvement spans pivotal studies including trials for tofersen , edaravone , AMX0035 , Healey ALS MyMatch , and the HEALEY ALS Platform Trial – an innovative adaptive platform trial design that is reshaping how ALS treatments are evaluated. Many serve as lead or coordinating sites in multi-center studies and publish findings in peer- reviewed journals, advancing trial design and methodology. These sites have also played key roles in launching expanded access programs, expanding investigational treatment opportunities for people living with ALS. NEALS investigators have helped guide the design and implementation of these programs across the ALS field, bringing clinical trial expertise to ensure that expanded access pathways are ethical, scientifically informative, and aligned with ongoing therapy development. Innovating in Care and Community Engagement Embedded within local ALS care systems, many NEALS sites uniquely blend research with compassionate, multidisciplinary care . They support patient education, navigation, and communication regarding research opportunities, while local leadership fosters inclusion of underrepresented populations through targeted regional outreach.
Visit the NEALS website to find a NEALS site near you: https://neals.org/about/neals-member-sites
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Member Sites Powering Innovation in ALS Trials
PLATFORM TRIALS With NEALS-led training and infrastructure, sites helped launch the HEALEY ALS Platform Trial , the first-ever platform trial for ALS . Their early adoption of adaptive protocols enabled faster trial launches and shared learning across therapeutic regimens.
Learn more:
Bringing ideas & innovation to ALS research
CLINICAL TRIAL MATCHING Through Healey ALS MyMatch , member sites assist with screening and enrollment into a centralized registry that helps
Learn more:
match people living with ALS to eligible clinical trials — both within and outside the Platform Trial.
DATA AND BIOSAMPLE SHARING (ALL ALS) Participating NEALS sites contribute critical biospecimens, digital health measures, clinical data, and patient-reported outcomes to the ALL ALS Consortium , a collaborative initiative building a robust dataset to support biomarker discovery and a deeper understanding of ALS subtypes.
Learn more:
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Partnering with NEALS
NEALS offers multiple pathways for academic investigators, pharmaceutical and biotech companies, foundations, and government sponsors to collaborate across the clinical trial lifecycle. Whether you're developing a study concept or preparing to launch a multi-site trial, NEALS provides scientific guidance, operational infrastructure, and community-centered support.
Advisory & Scientific Input Present your study at a Scientific Advisory Board (SAB) or Executive Committee meeting for expert input or affiliated trial consideration. Participate in the NEALS Workshop on Advancing Clinical Trials an expert-driven forum transforming ALS clinical trials and advancing groundbreaking drug development through open collaboration.
Email callen@neals.org to request a consultation with the SAB or find out more on ways to be considered a NEALS Affiliated Trial
Recruitment & Retention Strategy
Shared Learning & Innovation
Collaborate with NEALS’ Recruitment & Retention Committee to design inclusive and effective outreach strategies. Receive tailored feedback on trial materials and recruitment plans.
Participate in NEALS-hosted webinars , trainings , and workshops for cross-trial learning and innovation .
Patient Centered Trial Design Engage with ALS Research Ambassadors and the NEALS PEACe Committee to gather insights on trial design, participant experience and comunication.
Operational & Clinical Trial Support
Access BNI-led outcomes training and site readiness assessments to ensure trial quality and consistency. Leverage MGH’s trial coordination and data management services to streamline implementation.
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Looking Ahead
As NEALS enters its fourth decade, it is evolving to reflect both its scope and ambition. The Network of Excellence for ALS represents a future defined by global collaboration, open science, equitable access, and continuous learning. Built on three decades of shared trust and leadership, NEALS will continue to shape how ALS research is conducted – bringing science, speed, and hope closer to people living with ALS. NEALS has grown from a bold idea into a trusted leader in ALS clinical research. We’ve built infrastructure, trained the next generation, elevated the patient voice, and strengthened the science.
Yet the urgency of our mission remains. People living with ALS cannot wait – and neither will we.
As we look toward the future, we invite you to keep moving forward with us. To collaborate. To challenge. To lead. To advocate. And above all, to never stop pushing for better answers and bolder progress.
HELP DRIVE NEALS FORWARD Every contribution moves research forward and brings us closer to better treatments for people living with ALS.
If you would like to mail in a donation, please send your check (made payable to North East ALS Consortium ) to:
Donate today to be part of what comes next.
NEALS 33 Arch Street, 16th Floor Boston, MA 02110
https://neals.org/people-living-with-als/get- involved/make-an-impact/
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Acknowledgements & Appreciation
The NEALS story is one of shared purpose – and shared progress.
We extend our deepest gratitude to Dr. Merit Cudkowicz and Dr. Jeremy Shefner, the visionaries who founded NEALS in 1995, and to every Co-Chair, leadership member, and staff member who has helped guide the NEALS Network over the past three decades. Your dedication, leadership, and persistence laid the foundation for everything NEALS has become. We also acknowledge current and former Executive Committee and Scientific Advisory Board Co-Chairs who have dedicated their time to lead the organization including Dr. Jinsy Andrews, Dr. James Berry, Dr. Jonathan Glass, Dr. Nicholas Maragakis, Dr. Terry Heiman- Patterson, Dr. Timothy Miller, Dr. Jeffrey Rothstein, and Dr. Robert Brown. Additionally, we recognize Dr. Richard Bedlack for his leadership of the ALS Clinical Research Learning Institute® (CRLI) and his enduring contributions to advancing patient-centered research and education within NEALS. To the people living with ALS, including those who have passed, and every family member and caregiver who has participated in clinical trials: thank you. Your courage fuels this work, and your insights have shaped how research is designed, implemented, and shared. We are especially grateful to the PALS/CALS Advisors to the NEALS Executive Committee (Allison Bulat, the late Layne Oliff, Michael Robinson, and David Shulman), ALS Research Ambassadors® and the NEALS Patient and Caregiver Advisory Committee members who have brought wisdom, lived experience, and leadership into every level of our work.
To our member academic sites – your commitment to clinical excellence, collaboration, and compassionate care is the engine behind this network.
To our foundation partners, academic collaborators, and industry sponsors – your support has helped make many of NEALS’ most ambitious initiatives possible. We are especially proud to recognize long-standing partners such as the ALS Association and ALS Hope Foundation, whose sustained commitment to innovation, equity, and access continues to shape the future of ALS clinical research.
Together, we are building not just a research network – but a collaborative community grounded in generosity,
We are also deeply grateful to the anonymous donor whose extraordinary $1 million endowment gift will sustain the ALS Clinical Research Learning Institute® (CRLI) for years to come – ensuring that people living with ALS and caregivers remain at the center of research design, education, and advocacy. Philanthropic support has powered many of NEALS’ most transformative efforts, from early-phase trials and expanded access programs to the infrastructure and training that make patient-centered research possible.
connection, and shared resolve.
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NEALS EXECUTIVE COMMITTEE
NEALS research activities are guided by an experienced Scientific Advisory Board (SAB) and Executive Committee, bringing deep expertise and diverse perspectives to ALS research governance.
NEALS Co-Chair
NEALS Co-Chair
Christina Fournier, MD, MSc
NYU Langone Jinsy Andrews, MD, MSc
Johns Hopkins Nicholas Maragakis, MD
Emory University
Columbia University Kelly Gwathmey, MD
Barrow Neurological Institute Gale Kittle, RN
Barrow Neurological Institute Shafeeq Ladha, MD
Mayo Clinic Björn Oskarsson, MD
University of Pennsylvania Colin Quinn, MD
Barrow Neurological Institute Nicole Turcotte
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NEALS EXECUTIVE COMMITTEE
Sean M. Healey & AMG Center for ALS at Mass General James Berry, MD, MPH NEALS Exiting Co-Chair
Sean M. Healey & AMG Center for ALS at Mass General Merit Cudkowicz, MD, MSc
Richard Bedlack, MD, PhD
Duke University
Washington University, St Louis Timothy Miller, MD, PhD NEALS SAB Co-Chair
Terry Heiman-Patterson, MD
MGH Biostatistics Eric Macklin, PhD
Temple Health
Michael Robinson, MD PALS Advisor to the NEALS Executive Committee
NEALS SAB Co-Chair
Johns Hopkins Jeffrey Rothstein, MD, PhD
Barrow Neurological Institute Jeremy Shefner, MD, PhD
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NEALS EXECUTIVE COMMITTEE
David Shulman, MBA PALS Advisor to the NEALS Executive Committee
Penn State Health Zachary Simmons, MD
NEALS EXECUTIVE OPERATIONS TEAM
Associate Program Director Beverly Smits, MBA
Program Director Carly Allen
Communications & Outreach Coordinator Christina Smith
Administrative Coordinator Jennifer Heinly
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NEALS SCIENCE ADVISORY BOARD
NEALS SAB Co-Chair Washington University, St Louis Timothy Miller, PhD
NEALS SAB Co-Chair Johns Hopkins Jeffrey Rothstein, MD, PhD
NEALS Co-Chair
Jinsy Andrews, MD, MSc
NYU Langone
NEALS Co-Chair
Johns Hopkins Nicholas Maragakis, MD
Northwestern University Senda Ajroud-Driss, MD
University of Michigan Sami Barmada, MD, PhD
Emeritus SAB Chair
Sean M. Healey & AMG Center for ALS at Mass General Merit Cudkowicz, MD, MSc
Barrow Neurological Institute Robert Bowser, PhD
UMass Medical Robert Brown, MD, PhD
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NEALS SCIENCE ADVISORY BOARD
Emory University Christina Fournier, MD, MSc
Emory University Jonathan Glass, MD
University of Colorado Anschutz Brent Harris, MD, PhD
Columbia University Matthew Harms, MD
Sean M. Healey & AMG Center for ALS at Mass General Clotilde Lagier-Tourenne, MD, PhD
Sean M. Healey & AMG Center for ALS at Mass General Sabrina Paganoni, MD, PhD
Thomas Jefferson University Piera Pasinelli, PhD
Barrow Neurological Institute Rita Sattler, PhD
Barrow Neurological Institute Jeremy Shefner, MD, PhD
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Get in Touch with NEALS
www.neals.org
callen@neals.org
33 Arch Street, Floor 16 Boston, MA 02110
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