Videos

Welcome to a new session of Citizen Research with Dr. Terry Heiman-Patterson and Dr. Lyle Ostrow. In this session, we explore a new format from EverythingALS focused on Citizen Research — an interactive, community-driven approach to understanding and interpreting ALS science together. We are joined by two longtime leaders in ALS clinical care and research, Dr. Terry Heiman-Patterson, neurologist and Director of the MDA ALS Center of Hope at Temple University, and Dr. Lyle Ostrow, neurologist, researcher, and Director of the Neuromuscular Pathology Lab at Temple University. Together, they guide a dynamic discussion designed to help patients, caregivers, and the broader ALS community become more informed and empowered consumers of scientific information. This session focuses on how to navigate the rapidly evolving ALS research landscape — where new findings, trials, and headlines emerge almost daily — and how to critically evaluate what they mean. In this talk, we cover: • What “citizen research” means and why it matters in ALS • How to interpret scientific announcements, trial results, and emerging therapies • Common challenges in understanding ALS research and clinical trial data • How to distinguish signal from noise in a fast-moving research environment • The importance of collaboration between clinicians, researchers, and the ALS community • How patients and caregivers can engage meaningfully in research conversations As ALS research continues to accelerate, building a shared understanding across the community is essential. Sessions like this aim to bridge the gap between complex science and real-world impact — empowering everyone to participate in the journey toward effective treatments and, ultimately, a cure. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #CitizenResearch #ALSAdvocacy #NeurodegenerativeDisease #ALSScience #ClinicalTrials #ALSAwareness #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward.

Welcome to another compelling episode of #ExpertTalk by EverythingALS. * This presentation is intended for the US audience. In this session, we are joined by Nil Confer, PhD, Executive Medical Director at Prilenia Therapeutics, and Sabrina Paganoni, MD, PhD, Harvard Medical School and Massachusetts General Hospital, to discuss the PREVAiLS Study, a Phase 3 clinical trial investigating pridopidine as a potential treatment for ALS. Dr. Confer introduces the science behind pridopidine, an investigational therapy that activates the sigma-1 receptor, a cellular pathway believed to play an important role in neuronal health and neuroprotection. He explains how this receptor helps regulate cellular stress responses, protein folding, and mitochondrial function — all processes that can be disrupted in neurodegenerative diseases like ALS. Dr. Paganoni then reviews findings from the HEALEY ALS Platform Trial (Regimen D), where pridopidine was previously studied. While the primary endpoints were not met in the overall population, exploratory analyses suggested potential benefits in people with early-stage ALS (within 18 months of symptom onset) and definite or probable ALS diagnoses, particularly in respiratory and bulbar function measures such as speech. These insights informed the design of the global Phase 3 PREVAiLS trial, which will enroll approximately 500 participants and evaluate functional outcomes over a 48-week placebo-controlled period followed by an open-label extension. In this talk, we cover: • What pridopidine is and how it targets the sigma-1 receptor • Why this cellular pathway may be important for motor neuron protection • Key findings from the HEALEY ALS Platform Trial • How those results shaped the design of the PREVAiLS Phase 3 study • Eligibility criteria and what participation in the trial involves • The importance of global collaboration in advancing ALS therapies Clinical trials like PREVAiLS are a critical step in the effort to develop new treatment options for ALS. By bringing together researchers, clinicians, and the ALS community, studies like this help move promising therapies through the development pipeline and closer to potential approval. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #NeurodegenerativeDisease #ALSScience #ALSAdvocacy #MotorNeuronDisease #ALSAwareness #ALSUpdates #ALSExperts #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward.

Welcome to another compelling episode of #ExpertTalk by EverythingALS. In this session, we are joined by Dr. Gary Pattee, who explores a fascinating and emerging area of ALS research: the possible role of chloroviruses in neurodegenerative disease. Dr. Pattee walks us through how these extremely common viruses, which most humans are exposed to through water and the environment, may interact with the nervous system in ways that are only now beginning to be understood. This discussion challenges conventional thinking about ALS by examining whether infectious or environmental factors could play a role alongside genetics and other known risks. In this talk, we cover: • What chloroviruses are and how humans are exposed to them • Why these viruses are being studied in connection to cognitive and neurological function • What current research suggests about their possible link to ALS • What remains unknown and what future research needs to explore • How this fits into the broader search for ALS causes and treatments This is not about drawing premature conclusions. It is about asking important questions and opening new avenues of scientific inquiry that could one day help explain why ALS develops in some people and not others. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #NeurodegenerativeDisease #ALSScience #ALSAdvocacy #MotorNeuronDisease #ALSAwareness #ALSUpdates #ALSExperts #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward.

Welcome to our inaugural HopeUntangled Session, recorded on February 18, 2026. In this session, we are joined by Dr. Richard Bedlack, Dr. Michael Robinson, Dr. Terry Heiman-Patterson, and Dr. Lyle Ostrow - each bringing the conversation about ALS research directly into your living room. Together, they share insights on what this series is all about: grounding hope in evidence, and learning how to do so. Covered is this session were topics such as: • "Anatomy of Press Release: Moving Beyond the Headline" with Michael Robinson, MD - a practical guide to decoding clinical trial updates, distinguishing data from interpretation, and evaluating risk alongside potential benefit. • The realities and limitations of CRISPR and gene editing for C9-related ALS. • Questions around methylcobalamin (B12) injections, fecal transplant research, and compassionate use pathways. • How AI is beginning to shape ALS research - from identifying patterns in complex datasets to improving how patients may be paired with clinical trials. Next Session Wednesday, March 18, 2026 Register Here: https: //rnrli.share.hsforms.com/2H-mHZrbGTxSIEUtj29grug Submit your questions here: https://rnrli.share.hsforms.com/2SvHcksygSnau0lCFtfm2bw *If you registered for "All Sessions" previously, you do not need to register again. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #GeneTherapy #PrecisionMedicine #ALSCommunity #MotorNeuronDisease #ALSScience #ALSAdvocacy #ALSAwareness #ALSUpdates #ALSExperts #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward.

Welcome to another compelling episode of #ExpertTalk by EverythingALS. In this session, we are joined by Dr. Stephen J. Kolb, Director of the ALS and Motor Neuron Disease Multidisciplinary Clinic and Research Program at The Ohio State University Wexner Medical Center, and Professor of Neurology and Biological Chemistry and Pharmacology at Ohio State. Dr. Kolb shares insights from the front lines of ALS research and clinical care, focusing on how advances in molecular biology and gene therapy are shaping the future of treatment for people living with ALS. Drawing from both his laboratory and clinical experience, he explores how understanding the genetic and cellular mechanisms of motor neuron disease is opening new pathways for targeted therapies. This talk highlights the evolving role of precision medicine in ALS, the importance of patient-derived models, and the challenges and opportunities involved in translating research discoveries into real-world clinical care. In this talk, we cover: • How molecular and genetic research is advancing our understanding of ALS • The role of patient-derived models in studying motor neuron disease • Progress and challenges in developing targeted gene therapies • What it takes to move discoveries from the lab to the clinic • How clinical trials are shaping the future of ALS treatment This session offers a powerful look at how science, medicine, and patient-centered research come together to drive innovation and hope in the ALS community. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #GeneTherapy #PrecisionMedicine #ALSCommunity #MotorNeuronDisease #ALSScience #ALSAdvocacy #ALSAwareness #ALSUpdates #ALSExperts #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward.

Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Suma Babu, Co-Director, Neurological Research Institute, Massachusetts General Brigham and Associate Professor of Neurology, Harvard Medical School Dr Babu discussed: • Big picture: This talk introduced Healey ALS MyMatch, a new approach to running faster, smarter early-phase ALS clinical trials by focusing on biology, biomarkers, and patient-centered design. • Why it matters: MyMatch aims to reduce trial delays, improve access, and increase the chances of identifying promising treatments by better matching people living with ALS to the right studies. • What’s happening now: The program has already launched its first trial and is building a growing pipeline of additional therapies, with more studies expected in the near future. • What participants should know: MyMatch is designed for people with ALS who meet specific eligibility criteria, while expanded access programs and other pathways remain important options for those who do not qualify. 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #HealeyMyMatch 🔔 If you're passionate about advancing ALS care and research — like, subscribe, and turn on notifications. Share this episode to raise awareness and support for the ALS community.