Videos

In this Expert Talk, Tish Hevel and Dr. Robert Bowser explore The Final Gift of Brain Donation: its Critical Role in Research and What You Need to Know. They discuss why donated human brain and spinal cord tissue is important for neuroscience research, particularly in ALS, and how it can help advance understanding of disease and drug development. Dr. Bowser explains how postmortem tissue helps researchers study ALS pathology, disease mechanisms, biomarkers, and treatment response, and how tissue can be connected with clinical and longitudinal research data to better understand disease progression. Tish Hevel discusses why brain donation matters, common misconceptions, and how the donation process works. She explains the role of the Brain Donor Project and NIH-supported brain banks, as well as what families need to know when planning for donation. The speakers also discuss organ and body donation, healthy controls, genetic variants, the timing and coordination involved in tissue recovery, and how donated tissue can support research for years to come. In this talk, we cover: • Why brain and spinal cord tissue is important for ALS research • How donated tissue helps researchers study disease and treatment response • The role of tissue in biomarkers, drug development, and clinical research • Common misconceptions about brain donation • How the brain donation process works • The role of the Brain Donor Project and NIH-supported brain banks • Why healthy controls and genetic-variant donors are important • How donated tissue can contribute to research over the long term To learn more about brain donor, go to https://braindonorproject.org and complete the Brain Pre-registration form here https://portal.braindonorproject.org/ While filling out the form answer this question as below: "How were you made aware of The Brain Donor Project?", select "Patient or Disease Support Group" and enter "EverythingALS" as the organization name. 📲 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/@UCpABF6CdW2-0WWmrQEMyq_w #ExpertTalk #EverythingALS #BrainDonation #ALSResearch #ALS #ALSCommunity #Neuroscience #BrainResearch #TissueDonation #ClinicalResearch #DrugDevelopment #NeurologicalResearch #MedicalResearch

In this Expert Talk, Dr. David Taylor shares insights into the latest developments shaping ALS research in 2026. This session highlights some of the most important areas of progress in ALS research, including international collaboration, artificial intelligence, increased investment in research, advances in clinical trials, and new approaches to understanding and treating ALS. Dr. Taylor also discusses the growing focus on identifying ALS earlier and developing treatments that are better matched to individual patients. Dr. Taylor explores how researchers around the world are working together to accelerate progress, how new technologies and data are helping scientists better understand ALS, and how clinical trials are evolving to test potential treatments more effectively. He also discusses promising areas of research, including TDP43, biomarkers such as neurofilament, genetic testing, and efforts to understand ALS before symptoms begin. Throughout the discussion, Dr. Taylor highlights the importance of bringing researchers, people living with ALS, organizations, and industry together to move research forward. He also addresses questions about early detection, genetics, clinical trials, emerging treatments, and what the future may hold for ALS research. In this talk, we cover: • The latest developments in ALS research • Global collaboration and the importance of working together • The growing role of AI and new technologies in ALS research • How clinical trials are evolving • Personalized approaches to ALS treatment • New research into TDP43 and other potential treatment targets • Biomarkers and efforts to detect ALS earlier • Genetic testing and understanding the causes of ALS • Research into ALS before symptoms appear • Data sharing and collaboration across the ALS community • The future of ALS research and treatment 📲 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/@UCpABF6CdW2-0WWmrQEMyq_w #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #ALS #ClinicalResearch #ClinicalTrials #AI #Biomarkers #Genetics #TDP43 #Neurofilament #DavidTaylor

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