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NEALS 30-Year Impact Report

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.

30-Year Impact Report		1
Network of Excellence for ALS (NEALS)		1
FROM HOPE TO IMPACT		1
30 Years of NEALS Leadership in Advancing ALS Research Through Collaboration, Community, Education, Science and Innovation.		1
Table of Contents		3
4 6 7 8 10 11 12 15 16 17 18 19 20 21 21 22 23 24 25 26 31		3
Letter from the Co-Chairs		4
Jinsy Andrews		5
JINSY ANDREWS, MD, MSC		5
CO-CHAIR		5
Nicholas Maragakis		5
NICHOLAS MARAGAKIS, MD		5
CO-CHAIR		5
Our Mission		6
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.		6
Our Story: From Vision to Network		7
THAT CONVERSATION BECAME NEALS		7
The group’s first NIH-funded clinical trial launched in 1999, marking the first time NIH had ever funded a trial in ALS.		7
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.		7
Over thirty years, NEALS has become synonymous with excellence, partnership, and progress.		7
Redefining Excellence Through Collaboration		8
Building the Modern ALS Trial Infrastructure		8
By the Numbers		9
Members Trained		9
3000+		9
NEALS Affiliated Trials		9
80+		9
Drugs to Market		9
160+ Member Sites		9
Open-Source Data Sharing		9
Shared Patient-Based Resources		9
177,965		9
Biorepository Samples Shared		9
28,000+		9
ALS Clinical Trial Participants in PRO-ACT		9
Leading Breakthroughs in ALS		9
FDA Approved Therapies		9
Innovative Platform Trial and Other Trial Innovations		9
Collaborative Consortia		9
Innovation and Leadership in ALS Trials		10
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.		10
Championing Open Science and Data Sharing		11
Long before open science became a guiding principle across biomedical research, NEALS recognized that data sharing could dramatically accelerate discovery.		11
NEALS Biorepository Key Features		11
A Multiplier Effect		11
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		11
Together, these resources shifted ALS research from isolated datasets to a shared global research ecosystem.		11
Visit the NEALS Sample Repository page to learn more about the sample request process: https://neals.org/als-researchers/neals-sample-repository		11
Building a Community: Gathering the Field to Drive Progress		12
NEALS Serves as a Central Hub for Collaboration, Education, Innovation, and Sharing Information		12
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.		12
With a focus on member initiatives and therapy development, the meeting prepares attendees for upcoming clinical trials and fosters collaboration among the ALS community.		12
1000+		12
In-Person & Virtual Attendees including, clinicians, industry leaders, government and foundation partners, and individuals with lived ALS experience		12
Annual Meetings held to date		12
200+		12
Abstracts annually now published in Muscle & Nerve, showcasing cutting-edge ALS research		12
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.		13
Focus areas include critical topics shaping ALS trials, including discussions that		13
Examine how discoveries in the laboratory translate into clinical trials and what evidence is needed before testing therapies in people.		13
Explore how biological markers can help researchers better understand disease progression and measure whether a treatment is working.		13
Evaluate how ALS trials are designed, how results are analyzed, and how researchers determine whether a treatment provides meaningful benefit.		13
Demonstrate how improvement or slowing of disease progression is measured and what outcomes matter most for people living with ALS.		13
Explore partnerships and innovative funding approaches that help bring new therapies into clinical testing.		13
Our Work in Action		14
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.		15
Interested in Learning More? Visit:		15
https://neals.org/als-researchers/become-a-neals-member		15
Training the People who Power Progress		15
Infrastructure Alone Does Not Move Science Forward, People Do.		15
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.		15
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.		16
Centering the ALS Community in Research		16
Expanding Knowledge Through Community Webinars		17
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.		17
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.		17
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.		17
75 +		17
Community Webinars to Date		17
Supporting Research Growth Through Funding Awareness & Recognition		18
NEALS is dedicated to fostering the future of ALS research by actively sharing funding opportunities and resources with its member network.		18
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.		18
Additionally, NEALS recognizes emerging research excellence by awarding abstract prizes at its annual meeting, encouraging innovation and highlighting exceptional research.		18
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 .		18
MEMBER ACADEMIC SITES		20
A Network Built for Excellence		20
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.		20
Advancing Science and Treatment Innovation		21
Innovating in Care and Community Engagement		21
Visit the NEALS website to find a NEALS site near you: https://neals.org/about/neals-member-sites		21
Member Sites Powering Innovation in ALS Trials		22
Bringing ideas & innovation to ALS research		22
PLATFORM TRIALS		22
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.		22
CLINICAL TRIAL MATCHING		22
Through Healey ALS MyMatch, member sites assist with screening and enrollment into a centralized registry that helps match people living with ALS to eligible clinical trials — both within and outside the Platform Trial.		22
DATA AND BIOSAMPLE SHARING (ALL ALS)		22
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.		22
Looking Ahead		24
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.		24
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.		24
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.		24
Yet the urgency of our mission remains. People living with ALS cannot wait – and neither will we.		24
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.		24
HELP DRIVE NEALS FORWARD		24
Every contribution moves research forward and brings us closer to better treatments for people living with ALS.		24
Donate today to be part of what comes next.		24
https://neals.org/people-living-with-als/get-involved/make-an-impact/		24
Together, we are building not just a research network – but a collaborative community grounded in generosity, connection, and shared resolve.		25
Acknowledgements & Appreciation		25
The NEALS story is one of shared purpose – and shared progress.		25
NEALS EXECUTIVE COMMITTEE		26
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.		26
NEALS Co-Chair		26
Jinsy Andrews, MD, MSc		26
NEALS Co-Chair		26
Nicholas Maragakis, MD		26
Christina Fournier, MD, MSc		26
Gale Kittle, RN		26
Kelly Gwathmey, MD		26
Shafeeq Ladha, MD		26
Björn Oskarsson, MD		26
Colin Quinn, MD		26
Nicole Turcotte		26
NEALS EXECUTIVE COMMITTEE		27
Richard Bedlack, MD, PhD		27
NEALS Exiting Co-Chair		27
James Berry, MD, MPH		27
Merit Cudkowicz, MD, MSc		27
Terry Heiman-Patterson, MD		27
Eric Macklin, PhD		27
NEALS SAB Co-Chair		27
Timothy Miller, MD, PhD		27
PALS Advisor to the NEALS Executive Committee		27
Michael Robinson, MD		27
NEALS SAB Co-Chair		27
Jeffrey Rothstein, MD, PhD		27
Jeremy Shefner, MD, PhD		27
NEALS EXECUTIVE COMMITTEE		28
David Shulman, MBA		28
PALS Advisor to the NEALS Executive Committee		28
Zachary Simmons, MD		28
Program Director		28
Carly Allen		28
NEALS EXECUTIVE OPERATIONS TEAM		28
Associate Program Director		28
Beverly Smits, MBA		28
Communications & Outreach Coordinator		28
Christina Smith		28
Administrative Coordinator		28
Jennifer Heinly		28
NEALS SCIENCE ADVISORY BOARD		29
NEALS SAB Co-Chair		29
Timothy Miller, PhD		29
NEALS SAB Co-Chair		29
Jeffrey Rothstein, MD, PhD		29
NEALS Co-Chair		29
Jinsy Andrews, MD, MSc		29
NEALS Co-Chair		29
Nicholas Maragakis, MD		29
Senda Ajroud-Driss, MD		29
Sami Barmada, MD, PhD		29
Robert Bowser, PhD		29
Emeritus SAB Chair		29
Robert Brown, MD, PhD		29
Merit Cudkowicz, MD, MSc		29
NEALS SCIENCE ADVISORY BOARD		30
Christina Fournier, MD, MSc		30
Jonathan Glass, MD		30
Brent Harris, MD, PhD		30
Matthew Harms, MD		30
Clotilde Lagier-Tourenne, MD, PhD		30
Sabrina Paganoni, MD, PhD		30
Piera Pasinelli, PhD		30
Rita Sattler, PhD		30
Jeremy Shefner, MD, PhD		30
Get in Touch with NEALS		31

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