Videos

Welcome to a new session of Citizen Research with Dr. Terry Heiman-Patterson and 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 Dr. Terry Heiman-Patterson, MD — Director of the MDA ALS Center of Hope and Director of Neurodegenerative Disorders at Temple University — alongside Dr. Lyle Ostrow, MD, PhD, neurologist, ALS researcher, Director of the Temple Neuromuscular Pathology Lab and Temple ALS Postmortem Core, and Chair of the Programmatic Panel for the Department of Defense ALS Research Program (ALSRP), for an engaging discussion on how patients, caregivers, and the broader ALS community can better understand, evaluate, and interpret scientific research. As ALS research continues to evolve, understanding how to assess scientific evidence has never been more important. This session provides a practical framework for reading research papers, understanding the peer review process, evaluating potential therapies, and distinguishing promising findings from what the available evidence can actually support. In this talk, we cover: • Why critical thinking is essential when evaluating ALS research • How to read and evaluate research papers and potential therapies • The difference between preprints and peer-reviewed research • How to assess study findings, evidence, limitations, and relevance to patients • How to understand what additional evidence is needed before drawing conclusions about emerging ALS therapies 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 #PeerReview 🔔 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.

In this Expert Talk, Dr. Tyrell Simkins and Dr. James Berry explore The ALSTARS Trial: Updates on the COYA 302 Clinical Trial and the Path Ahead. This session highlights the role of the immune system in ALS, the importance of inflammation in disease, and the role of regulatory T cells in helping regulate the immune response. Dr. Simkins and Dr. Berry discuss what regulatory T cells do, what may go wrong in ALS, and how these cells may represent an emerging area of therapeutic research. They also provide an overview of COYA 302, an investigational therapeutic approach that combines two existing medicines, and share early observations from the first four people treated. The speakers explain how the ALSTARS clinical trial is designed, including randomization, placebo control, the extension phase, and the injections involved in the study. They also discuss what clinical trial participation looks like and the importance of carefully evaluating early findings before broader conclusions can be drawn. Throughout the discussion, Dr. Simkins and Dr. Berry explore the path ahead for COYA 302 and the ALSTARS trial, including what needs to happen before researchers can better understand the potential of this approach for people living with ALS. In this talk, we cover: • The role of the immune system and inflammation in ALS • What regulatory T cells do and what may go wrong in ALS • An introduction to COYA 302 and its therapeutic approach • Early observations from the first four people treated • How the ALSTARS clinical trial is designed • What participation in the ALSTARS trial involves • The path ahead for COYA 302 and the ALSTARS trial 📲 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 #ALS #ALSTARS #COYA302 #ClinicalTrials #Immunology #RegulatoryTCells #ALSInnovation #ClinicalResearch #TyrellSimkins #JamesBerry

Welcome to a new session of Citizen Research with Dr. Terry Heiman-Patterson and 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 Dr. Terry Heiman-Patterson, MD — Director of the MDA ALS Center of Hope and Director of Neurodegenerative Disorders at Temple University — alongside Dr. Lyle Ostrow, MD, PhD, neurologist, ALS researcher, Director of the Temple Neuromuscular Pathology Lab and Temple ALS Postmortem Core, and Chair of the Programmatic Panel for the Department of Defense ALS Research Program (ALSRP), for an engaging discussion on how patients, caregivers, and the broader ALS community can better understand, evaluate, and interpret scientific research. As ALS research continues to evolve, understanding how to assess scientific evidence has never been more important. This session explains how biomarkers are used in clinical trials, why they matter, how different types of biomarkers serve different purposes, and how they can help researchers better understand treatment effects and improve future trial design. In this talk, we cover: • Why critical thinking is essential when evaluating ALS research • What biomarkers are, why they matter, and how they're used in ALS clinical trials • The different types of biomarkers and what each one tells us • How biomarkers help researchers understand why clinical trials succeed or fail • Real-world ALS clinical trial case studies, including ATLAS, VALOR, BIIB078, ceftriaxone, and lithium • Why target engagement doesn't always translate into clinical benefit • The importance of donated biospecimens and postmortem research in advancing ALS discovery • Practical tips for interpreting scientific studies, emerging therapies, and research headlines 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: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / @everythingals #EverythingALS #CitizenResearch #ALSResearch #ALSCommunity #ClinicalTrials #ALSScience #NeurodegenerativeDisease #ResearchLiteracy #CriticalThinking #ALSAwareness #biomarkers 🔔 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.

In this Expert Talk, Dr. Bryan Traynor shares insights into Recent genomic and proteomic advances in ALS/FTD. This session highlights the latest advances in ALS and FTD genetics, genomics, proteomics, and biomarker research. Dr. Traynor discusses how genetic discoveries, plasma proteomics, and emerging diagnostic approaches are improving our understanding of disease biology, supporting earlier diagnosis, and shaping the future of clinical trials and therapeutic development. Dr. Traynor examines the role of the C9orf72 repeat expansion in ALS and FTD, explores how genetics influences disease variability, and discusses the growing potential of plasma proteomics to identify biomarkers that may enable earlier diagnosis and prevention trials. He also shares insights into drug repurposing research, including ongoing work evaluating acamprosate as a potential therapeutic approach for C9orf72-associated ALS and FTD. Throughout the discussion, Dr. Traynor highlights how advances in genomics, proteomics, and biomarker discovery are transforming ALS research and helping move the field toward more precise diagnostics, improved clinical trial design, and future targeted therapies. In this talk, we cover: • Introduction to ALS and the genetics of ALS/FTD • The role of the C9orf72 repeat expansion in ALS and FTD • How genetics influences disease variability • Plasma proteomics and emerging biomarkers for ALS • Drug repurposing research and the acamprosate clinical trial • New approaches to ALS diagnosis and prevention trials • The future of genomics, proteomics, and precision medicine in ALS 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/company/everythingals ► Facebook: https://www.facebook.com/everythingals ► Subscribe for more Expert Talks: https://www.youtube.com/@EverythingALS #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #ALS #FTD #Biomarkers #Genomics #Proteomics #Neurology #ClinicalResearch #BryanTraynor

Welcome to a new session of Citizen Research with Dr. Terry Heiman-Patterson and 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 Dr. Terry Heiman-Patterson, MD - Director of the MDA ALS Center of Hope and Director of Neurodegenerative Disorders at Temple University - alongside Dr. Lyle Ostrow, 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: • Intranasal Exosome & Secretome Therapy for ALS • Two studies from the same research group, appraised in turn • Paper 1: A multi-disease study involving ALS, Kennedy disease, CMS, and Lewy body dementia (n = 18) • Paper 2: An ALS-only follow-up study (n = 70) • The rationale, methods, and findings presented in each paper • How these studies compare against the ALSUntangled "Ten Red Flags" framework • A closer look at the Prodromos Clinic website and the claims presented there 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.

In this Expert Talk, Alon Ben Noon and Prof. Jeffrey Rosenfeld explore PrimeC – Connecting the Dots: Biomarkers, Survival, and the Future of ALS Research. This session highlights the latest developments surrounding PrimeC, an innovative therapeutic approach being investigated for ALS, and examines the critical role biomarkers play in understanding disease progression and evaluating treatment effectiveness. Alon Ben Noon and Prof. Rosenfeld discuss how emerging biomarker research may help connect important insights around survival, disease monitoring, and future therapeutic development. They also explore the broader ALS research landscape, the importance of clinical innovation, and the potential impact of new approaches for people living with ALS. Throughout the discussion, the speakers share perspectives on advancing ALS care through research, improving clinical trial outcomes, and building a more data-driven future for ALS therapeutics. In this talk, we cover: • Introduction to PrimeC and its development • The role of biomarkers in ALS research • Understanding survival endpoints and disease progression • How biomarkers can support future clinical trials • The evolving ALS therapeutic landscape • The future of personalized and targeted ALS treatments • The importance of ongoing clinical research and patient participation 📲 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 #PrimeC #Biomarkers #ClinicalTrials #ALSTreatment #ALSInnovation #Neurology #SurvivalResearch #JeffreyRosenfeld #AlonBenNoon #ClinicalResearch