News & Stories
Researchers Analyze Medication Effects on ALS + More Research Stories
Research Spotlight
Researchers to Analyze Medication Effects on the Development and Progression of ALS and Parkinson’s Diseases
ALS United, in partnership with the ALS CURE Project, Livermore Lab Foundation, RDM Positive Impact Foundation, and Stanford University, is supporting a $300,000 collaborative research effort at Lawrence Livermore National Laboratory.
Led by Priyadip Ray, PhD, Lawrence Livermore National Laboratory; Richard Reimer, MD, Stanford University and Veterans Administration; Jennifer Wilson, PhD, University of California Los Angeles; and Kevin Grimes, MD, Stanford University, the project seeks to better understand environmental factors, specifically medications, and their effects on ALS and Parkinson’s diseases.
“Medications typically have well-defined therapeutic targets but often also have off-target effects,” said Dr. Ray. “Our long-term goal is to identify associations between medications and progression of neurodegenerative diseases through the analysis of electronic health records (EHRs). As an initial step, we have focused on ALS as a proof-of-principle study.”
The funds will allow researchers to expand previous work funded by the Livermore Lab Foundation with support from the ALS CURE Project, which focused on EHR data for more than 20,000 veterans diagnosed with ALS – a group that for unknown reasons develops ALS up to 1.5 times the rate of the general population. Initial analysis yielded multiple drugs and drug classes associated with longer survival. However, a key limitation of the initial study included demographic characteristics of the veteran population differing significantly from a general population, most notably the male predominance and military experience – both known risk factors for developing ALS and potentially limiting the generalizability of the findings.
Expansion of the project includes leveraging the Optum EHR dataset of millions of unique patient records. Access to Optum, provided by Stanford, will enable the team to assemble a longitudinal EHR dataset for patients diagnosed with ALS that LLNL’s machine learning tools can assess to identify potential drug repurposing candidates that slow progression.
The RDM Positive Impact Foundation’s contribution will support parallel work for Parkinson’s using the Optum EHR dataset which will leverage the research techniques used in the ALS research. In addition, the research will identify patterns or similarities across the ALS and Parkinson’s disease states that can accelerate therapies for all neurodegenerative disorders.
Research & Study Opportunities
ALL ALS Research Studies – Now Enrolling at Portland Site
The ALL ALS Consortium is enrolling people living with ALS, their caregivers, family, friends, and those genetically at risk into two observational studies: ASSESS and PREVENT.
These studies aim to build the largest-ever collection of clinical data and biological samples to help researchers better understand ALS and develop more effective treatments.
- Providence Neurological Specialties in Portland is a participating site. To learn more or get involved, call (971) 231-8245, visit all-als.org, or email info@all-als.org.
Virtual Global Clinical Research Learning Institute (CRLI) – Apply by June 30
This new online program is for anyone with a personal connection to ALS/MND who wants to:
- Learn more about ALS/MND research
- Understand how research studies work
- Share information in their community
- Support global advocacy efforts
Program Dates: October 20–29, 2025
Learn more and apply: Virtual Global CRLI
Upcoming Research Events & Opportunities
NEALS Annual Meeting
October 8–10, 2025
Clearwater, Florida & Online
The Northeastern ALS Consortium (NEALS) Annual Meeting brings together researchers, clinicians, and advocates to share the latest in ALS research and clinical trials. Open to both in-person and virtual attendees.
Learn more: NEALS Annual Meeting
International Symposium on ALS/MND + Patient Fellows Program
December 5–7, 2025
San Diego, California & Online
The International Symposium on ALS/MND is the largest medical and scientific conference specific to ALS/MND, drawing global experts and advocates. This year’s event includes virtual and in-person options.
Learn more: The International Symposium on ALS/MND
Apply to attend through the Patient Fellows Program
This program supports individuals with a personal connection to ALS/MND—people living with the disease, caregivers, and gene carriers—by providing:
- Registration for the Symposium
- Networking opportunities with researchers and other community members
- Partial travel and lodging support for in-person attendees
- Optional access to the International Alliance Meetings (Nov 29–Dec 2) and virtual poster sessions
Learn more and apply: Patient Fellows Program
Save the Date – ALS Northwest Research Symposium
October 18, 2025
Portland, Oregon & Online
Join us in person for a day focused on making research more accessible for people living with ALS. Stay tuned for details on new opportunities for participation this year, including one-on-one interaction with researchers. Virtual attendance will also be available.
ALS Research News We’re Following
TPN-101 Selected for HEALEY ALS Platform Trial
Transposon Therapeutics’ TPN-101 has been selected for inclusion in the Phase 2/3 HEALEY ALS Platform Trial. This follows positive Phase 2 trial results in individuals with C9orf72 related ALS/FTD.
Amylyx Receives FDA Fast Track Designation for AMX0114
Amylyx Pharmaceuticals announced that AMX0114, an investigational antisense therapy targeting calpain-2 has been granted Fast Track designation by the FDA. The Phase 1 LUMINA trial is currently underway, with early data expected in 2025.
BrainStorm Announces Manufacturing Partnership for NurOwn
BrainStorm Cell Therapeutics has partnered with Minaris Advanced Therapies to manufacture NurOwn® (debamestrocel) for an upcoming Phase 3b ALS trial. NurOwn is an investigational cell therapy designed to modify disease progression.