Videos

In this Expert Talk, Dr. Olga Uspenskaya-Cadoz and Dr. James Berry introduce PIONEER-ALS - the first vectorized antibody clinical trial targeting TDP-43 in sporadic ALS. The session explores the science behind TDP-43 pathology in ALS and how innovative vectorized antibody approaches could potentially transform treatment strategies for sporadic ALS patients. Dr. Olga provides insight into the development of this ground-breaking trial, the rationale behind targeting TDP-43, and what this could mean for the future of ALS therapeutics. Throughout the discussion, the speakers also highlight the importance of innovation in ALS research, patient participation in clinical trials, and the growing momentum within the ALS therapeutic pipeline. In this talk, we cover: • Introduction to the PIONEER-ALS clinical trial • Understanding TDP-43 and its role in sporadic ALS • The science behind vectorized antibody therapies • How this approach differs from traditional ALS treatments • The future potential of targeted ALS therapeutics • The importance of clinical research and patient involvement 📲 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/company/everythingals/ ► Facebook: https://www.facebook.com/everythingals ► Subscribe for more Expert Talks: https://www.youtube.com/@EverythingALS #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #ClinicalTrials #SporadicALS #TDP43 #PioneerALS #VectorizedAntibodies #Neurology #ALSTreatment #ALSInnovation #ClinicalResearch

Welcome to a new session of Citizen Research with Dr. Lyle Ostrow. In this session, we explore an important idea at the heart of EverythingALS Citizen Research: You don’t have to be a scientist to think critically about research. We are joined by - neurologist, researcher, and Director of the Neuromuscular Pathology Lab at Temple University - for a thoughtful discussion on how patients, caregivers, and the broader ALS community can better understand and evaluate scientific information. As ALS research continues to evolve rapidly, new studies, therapies, and headlines emerge almost daily. This session is designed to help the community navigate that information with greater clarity, confidence, and critical thinking. In this talk, we cover: • Why critical thinking matters when reading ALS research • How to approach scientific headlines, announcements, and emerging therapies • Common misconceptions around clinical trials and research findings • How to distinguish meaningful progress from hype • The role of patients and caregivers in shaping research conversations • Why curiosity and informed discussion are valuable - even without a scientific background Citizen Research is about making science more accessible, collaborative, and empowering for everyone affected by ALS. Conversations like this help bridge the gap between complex research and real-world understanding — ensuring that the ALS community remains informed, engaged, and connected. 📲 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/company/everythingals ► Facebook: https://www.facebook.com/everythingals ► Subscribe for more Expert Talks: https://www.youtube.com/@EverythingALS #EverythingALS #CitizenResearch #ALSResearch #ALSCommunity #ClinicalTrials #ALSScience #NeurodegenerativeDisease #ResearchLiteracy #CriticalThinking #ALSAwareness #ExpertTalk 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keep important scientific conversations moving forward.

Welcome to another episode of #ExpertTalk by EverythingALS. In this session, we are joined by Dr. Jinsy Andrews, MD, Professor of Neurology at the NYU Grossman School of Medicine and Director of the ALS Center and Clinical Trials at NYU Langone Health, for an insightful discussion on the evolving ALS clinical trial landscape and the latest innovations shaping patient care and research. Dr. Andrews shares an overview of current ALS treatment options and discusses when it may be the right time for patients to consider participating in clinical trials. She breaks down the key factors involved in evaluating and choosing the right clinical trial, while also providing insight into today’s growing ALS therapeutic pipeline. Throughout the conversation, Dr. Andrews highlights the importance of improving the patient experience within clinical research. She explores how new tools such as Sava AI are helping support trial navigation, informed decision-making, and continuous patient feedback to make clinical trials more accessible and patient - centered. In this talk, we cover: • Current ALS treatment options and emerging therapies • When and how to consider clinical trials • Key factors in evaluating the right clinical trial • An overview of today’s ALS clinical trial pipeline • How Sava AI supports patients through the trial journey • The importance of patient feedback and innovation in research 📲 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 #ClinicalTrials #ALSUpdates #Neurology #ALSTreatment #ALSInnovation #PatientCare #ClinicalResearch #SavaAI 🔔 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.

We are excited to bring you a new episode of #ExpertTalk by EverythingALS. In this session, we are joined by Dr. Jack Humphrey, PhD, Assistant Professor in the Department of Neuroscience at the Icahn School of Medicine at Mount Sinai, for an in-depth discussion on how large-scale patient data is transforming our understanding of ALS. Dr. Humphrey explores how integrating genetics, functional genomics, and real-world patient data is helping researchers uncover the biological mechanisms that drive ALS and related neurodegenerative diseases. He explains how advances in computational biology and access to large, collaborative datasets are allowing scientists to move beyond isolated findings and begin identifying broader patterns across diverse patient populations. Throughout the discussion, Dr. Humphrey highlights the importance of global collaboration between researchers, clinicians, and the ALS community. He shares how post-mortem tissue analysis, genomic sequencing, and AI-driven approaches are being used together to better understand disease origins, progression, and potential therapeutic targets. In this talk, we cover: • How large-scale patient datasets are advancing ALS research • The role of genetics and molecular pathways in disease development • Why collaboration across institutions and countries is critical • How AI and computational tools are accelerating discovery • The challenges of working with complex, real-world data • Emerging insights into ALS and related neurodegenerative diseases This conversation underscores the growing role of data-driven science in ALS research. By combining patient experience with cutting-edge technology, researchers are building a more complete picture of the disease and opening new pathways toward meaningful treatments. 📲 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 #ALSData #BigData #ALSAdvocacy #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. Nicholas Maragakis, neurologist, researcher, and Director of the ALS Center for Cell Therapy and Regeneration Research at Johns Hopkins, and Co-Chair of NEALS for an in-depth discussion on the evolving science of ALS. Dr. Maragakis explores the complexity and heterogeneity of ALS, emphasizing that the disease is not driven by a single cause but rather a range of genetic and biological pathways. He explains how advances in stem cell models, including induced pluripotent stem cells (iPSCs), are helping researchers better understand how ALS presents differently across individuals and why personalized approaches to treatment may be necessary. Throughout the discussion, Dr. Maragakis addresses key audience questions on topics such as genetic vs. sporadic ALS, the role of TDP-43 abnormalities, inflammation, and emerging therapeutic strategies. He also shares insights into the challenges of drug development, including why many past treatments have failed and how researchers are working toward more precise, biomarker-driven clinical trials. In this talk, we cover: • Why ALS is considered a spectrum of disease rather than a single condition • The role of genetic mutations and cellular dysfunction in ALS progression • How iPSC models are advancing personalized ALS research • The potential and limitations of emerging therapies, including gene-targeting approaches • Current research on inflammation, biomarkers, and treatment development • Common questions from the ALS community, including vitamin B12, CRISPR, and disease variability This conversation highlights the importance of continued research, collaboration, and community engagement in advancing our understanding of ALS. As science moves toward more individualized approaches, discussions like this help bridge the gap between research and the lived experience of those affected by the disease. 📲 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 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.