PrimeC – Connecting the Dots with Alon Ben Noon & Prof. Jeffrey Rosenfeld. Everything ALS 2026-06-26 | 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: youtube.com/@EverythingALS#ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #PrimeC #Biomarkers #ClinicalTrials #ALSTreatment #ALSInnovation #Neurology #SurvivalResearch #JeffreyRosenfeld #AlonBenNoon #ClinicalResearch
Global Collaboration to Disrupt ALS with Dr. David Taylor Everything ALS 2026-09-17 | 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: youtube.com/@UCpABF6CdW2-0WWmrQEMyq_w #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #ALS #ClinicalResearch #ClinicalTrials #AI #Biomarkers #Genetics #TDP43 #Neurofilament #DavidTaylor
Citizen Research: You Dont Have to Be a Scientist to Think Critically About Research | September 2 Everything ALS 2026-09-03 | 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 therapiesCitizen 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: 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.
The ALSTARS Trial: Updates on the COYA 302 Clinical Trial and the Path Ahead Everything ALS 2026-08-20 | 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: youtube.com/@EverythingALS#ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #ALS #ALSTARS #COYA302 #ClinicalTrials #Immunology #RegulatoryTCells #ALSInnovation #ClinicalResearch #TyrellSimkins #JamesBerry
Citizen Research: You Dont Have to Be a Scientist to Think Critically About Research Everything ALS 2026-08-06 | 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 headlinesCitizen 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: bit.ly/42tPBmhFollow EverythingALS:► Website: 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.
Recent Genomic and Proteomic Advances in ALS/FTD with Dr. Bryan Traynor Everything ALS 2026-08-06 | 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: youtube.com/@EverythingALS#ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #ALS #FTD #Biomarkers #Genomics #Proteomics #Neurology #ClinicalResearch #BryanTraynor
Citizen Research, July 8, 2026 Everything ALS 2026-07-09 | 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 thereCitizen 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: 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.
A Multi-Target Approach to ALS Everything ALS 2026-07-01 | What makes a multi-target approach different in ALS research?In this short video, Professor Jeffrey Rosenfeld discusses how combination therapy and multiple therapeutic targets represent a different approach to ALS research.Watch the full webinar replay here:youtu.be/Sni-P5V6A-w?si=vMmG0YbkLbENfZRI #EverythingALS #ALSResearch #ClinicalResearch #Neurology #ALS
Insights from a Phase 2B ALS Study Everything ALS 2026-07-01 | What did this Phase 2B ALS study reveal?In this short video, we highlight key findings from a Phase 2B clinical study, including observations on early treatment, disease progression, and median survival in ALS.Watch the full webinar replay here:youtu.be/Sni-P5V6A-w#EverythingALS #ALSResearch #ClinicalResearch #ALS #Phase2B
Understanding Patient-Centered Research in Healthcare Everything ALS 2026-06-19 | What is PCORI, and why does it matter in healthcare research?In this short video, we explain the role of the Patient - Centered Outcomes Research Institute (PCORI) and how it helps ensure that patients, caregivers, and healthcare stakeholders have a voice in shaping medical research and healthcare decisions.Watch the full webinar replay here: youtube.com/watch?v=CdoEocau4Q0Let’s keep spreading awareness and accelerating research together. #ALS #NeurodegenerativeDiseases #Research #HealthcareInnovation
Patient & Stakeholder Involvement in Clinical Research | Citizen Research Everything ALS 2026-06-17 | Welcome to a special Citizen Research session from EverythingALS:In this discussion, Dr. Terry Heiman-Patterson and Dr. Lyle Ostrow from the Lewis Katz School of Medicine at Temple University explore why the voices of patients, caregivers, and stakeholders are essential to advancing meaningful clinical research.Clinical research is most effective when it reflects the priorities, experiences, and needs of the people it is designed to serve. This session examines how patient involvement can help shape stronger studies, improve outcomes, and ensure that research addresses questions that matter most to the ALS community.In this talk, we discuss:• Why patient and stakeholder engagement is critical in clinical research• How patient preferences and priorities influence study design• What comparative effectiveness research means for patients• The importance of asking the right questions about research findings• How patients and caregivers can contribute to the research process• Communicating research outcomes in ways that are meaningful and actionableCitizen Research is dedicated to making scientific research more accessible, collaborative, and impactful for everyone affected by ALS. Through conversations like these, we aim to empower patients, caregivers, researchers, and advocates to work together in advancing ALS research.📲 Download the EverythingALS App• Google Play: http://bit.ly/4nXqIYy• App Store: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: youtube.com/@EverythingALS#EverythingALS #ClinicalResearch #PatientEngagement #ALSResearch #ALSCommunity #ClinicalTrials #PatientAdvocacy #HealthcareResearch #CitizenResearch #MedicalResearch #ALSAwareness🔔 Like, subscribe, and turn on notifications to stay informed about the latest conversations shaping ALS research and patient - centered care.
Building Stronger Research Through Collaboration Everything ALS 2026-06-16 | Great research doesn't happen in isolation. Discover how collaboration between patients, advocacy groups, researchers, and industry leaders is helping shape the future of clinical research. Learn why stakeholder involvement is critical to developing more effective and patient-centered studies.🔗 youtube.com/watch?v=7I9nTooQc_k#EverythingALS #ClinicalResearch #PatientVoice #ResearchCollaboration #MedicalInnovation #ALSResearch
Dr. Olga Uspenskaya-Cadoz and Dr. James Berry discuss PIONEER-ALS and TDP-43 research. Everything ALS 2026-05-29 | 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: youtube.com/@EverythingALS#ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #ClinicalTrials #SporadicALS #TDP43 #PioneerALS #VectorizedAntibodies #Neurology #ALSTreatment #ALSInnovation #VectorY
Dr. Ostrow discusses precision medicine in ALS Everything ALS 2026-05-27 | "We need to match the drug to the biology. If a drug targets a particular biology, we should enroll the people who have a problem with that biology because they're most likely to respond. We need biomarkers to tell us if the drug affects the biology.#everythingals#criticalthinking#ALSCommunity#MustWatch#shorts
Dr. Ostrow discusses precision medicine in ALS Everything ALS 2026-05-27 | "We need to match the drug to the biology. If a drug targets a particular biology, we should enroll the people who have a problem with that biology because they're most likely to respond. We need biomarkers to tell us if the drug affects the biology.#everythingals#criticalthinking#ALSCommunity#MustWatch#shorts
You don’t have to be a scientist to think critically about research with Dr. Lyle Ostrow Everything ALS 2026-05-22 | 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 backgroundCitizen 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/company/everythingals► Facebook: facebook.com/everythingals► Subscribe for more Expert Talks: 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.
Updates & Innovations in ALS Clinical Trial Landscape by Dr. Jinsy Andrews Everything ALS 2026-05-11 | 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
Unlocking the Origins of ALS Through Large-Scale Patient Data Everything ALS 2026-04-17 | 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 diseasesThis 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
Which Cells Drive ALS? New Strategies for Designing Targeted Therapies Everything ALS 2026-04-07 | 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 variabilityThis 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
Citizen-Led Research & Open Data: Transforming the Future of ALS & Alzheimers. Everything ALS 2026-04-06 | EverythingALS.org and EverythingAD.org empowers and unites the global community through AI and data-driven insights to tackle ALS challenges. Citizen-Driven Research places those affected at the forefront of advancing understanding and solutions, offering them direct access to their own participation data, so that insights emerge continuously. This transformation of data into actionable results accelerates the development and accessibility of effective diagnostics and treatments, directly addressing the needs of the patient communities.Our diverse team includes people affected by Neurodegenerative diseases, physicians, scientists, entrepreneurs, AI engineers, software engineers, and students. We are dedicated to providing information to all affected by Neurodegenerative diseases, and those working toward a cure.
Citizen Research, March 18, 2026 Everything ALS 2026-03-22 | 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 conversationsAs 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
The PREVAiLS Study: Pridopidine for the Treatment of ALS Everything ALS 2026-03-20 | 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 therapiesClinical 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
Hi from Pathfinders Shawn and Joe Everything ALS 2026-03-03 | EverythingALS Pathfinders are people living with ALS and caregivers who support others on the journey.Pathfinder Joe recently traveled by rail across Canada and met up with fellow Pathfinder Shawn in British Columbia. Together they send greetings to wherever you are.ALS is part of the journey, but it is not the whole story. Where is your journey leading you?Learn more about the Pathfinders at www.everythingals.org#als #alscommunity #livingwithals #endals #alsresearch #everythingals #caretocure
Citizen Research, February 18, 2026 Everything ALS 2026-02-20 | 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.📲 Download the EverythingALS App• Google Play: http://bit.ly/4nXqIYy• App Store: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
To Kill a Motor Neuron: Model systems in the lab to understand ALS in the clinic Everything ALS 2026-01-24 | 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 treatmentThis 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
Chloroviruses and ALS with Dr. Gary Pattee Everything ALS 2026-01-13 | 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 treatmentsThis 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► X: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
Daily Beacon TikTok Everything ALS 2026-01-02 | The Daily Beacon is more than a message.It’s a moment of connection, passed from one person to another, reminding us that none of us walk this path alone.✨ Shared by people living with ALS and caregivers✨ Created for people living with ALS and caregivers✨ Rooted in community, care, and hope Sign up to receive a daily email at: tinyurl.com/mrxknf97#ALSCommunity #ALSFamily #alshope #everythingals
Healey ALS MyMatch: Overview & Update Everything ALS 2025-12-15 | 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 SchoolDr 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: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: 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.
Palliative Care for ALS: What is it? How can it help? How to access it? Everything ALS 2025-11-16 | Welcome to another compelling episode of #ExpertTalk by EverythingALS!In this session, we’re joined by Dr. Kara Bischoff, Associate Division Chief for Outpatient Palliative Care and the Medical and Director of the Outpatient Palliative Care Service at University of California, San Francisco (UCSF).Dr Bischoff discussed:• What palliative care truly is — and how it supports people living with ALS and their families• Common myths and misconceptions, including why palliative care is not the same as hospice• How a palliative care team works alongside an ALS care team to improve quality of life, communication, and decision-making📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy- App Store: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #palliativecare #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts🔔 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.
Updates on ALS Clinical Trials from Regeneron and VectorY Everything ALS 2025-11-02 | Welcome to another compelling episode of #ExpertTalk by EverythingALS!In this session, we’re joined by Dr. Oren Levy, Medical Director, Early Clinical Development, Regeneron Pharmaceuticals and Dr. Olga Uspenskaya-Cadoz, Chief Medical Officer, VectorY Therapeutics. Drs Levy and Uspenskaya-Cadoz discussed:• Progress on a new siRNA therapy for SOD1-ALS, focused on slowing disease progression through precision targeting (Dr. Levy).• Vectory Therapeutics introduced VTX002, an innovative gene therapy aimed at TDP43, advancing global trials that could redefine ALS treatment.• Both speakers emphasized collaboration, biomarkers, and patient-driven innovation as key to accelerating breakthroughs in ALS research.📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy- App Store: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts🔔 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.
Signals from the Outer Limits - What Ive Learned from Slow Progressors and ALS Reversals Everything ALS 2025-10-21 | Welcome to another compelling episode of #ExpertTalk by EverythingALS!In this session, we’re joined by Dr. Richard Bedlack, Stewart, Hughes, and Wendt Distinguished Professor, Professor of Neurology at Duke University, Associate of the Duke Initiative for Science & Society, and Faculty Network Member of the Duke Institute for Brain Sciences. Dr. Bedlack dives into:• What ALS reversals teach us about potential recovery and resilience.• How studying these rare cases can reveal new insights for future treatments.• His unique, optimistic approach to research that challenges conventional thinking about ALS.📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy- App Store: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts🔔 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.
October 15 - EverythingALS & Dr. Richard Bedlack Everything ALS 2025-10-13 | Join EverythingALS on Wednesday, October 15 as we are joined by Dr. Richard Bedlack. Register at: everythingals.org/events. We look forward to seeing you on zoom!
ALS BioBanking in the 21st Century Everything ALS 2025-10-05 | Welcome to another compelling episode of #ExpertTalk by EverythingALS!In this session, we’re joined by Dr. Brent Harris, Professor in the Departments of Neurology and Pathology at Georgetown University. He shares critical insights into the future of ALS biobanking — how cutting-edge tissue collection and analysis are driving breakthroughs in ALS research and patient care.Dr. Harris dives into:How biobanking advances our understanding of ALSThe power of brain and tissue donation in accelerating discoveryInnovative research shaping next-generation ALS therapiesI📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy- App Store: bit.ly/42tPBmhFollow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts🔔 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.
Genetics and ALS: What New Discoveries Mean for You and Your Family with Jennifer Roggenbuck MS, CGC Everything ALS 2025-10-02 | For this Expert Talk, we were honored to host Jennifer Roggenbuck, MS, CGC, a licensed genetic counselor and associate professor at The Ohio State University. Jennifer broke down the genetics of ALS, including:* Recent discoveries shaping our understanding of the disease* The role and implications of genetic testing* Key differences between familial and sporadic ALSShe also explored the progress being made in gene-targeted therapies and highlighted the vital role genetic counselors play in helping families navigate testing and results.This session also included personal stories from community members living with ALS, as well as discussions about ongoing research efforts and global initiatives advancing therapy development.📢 If you find this video helpful, please like, share, and subscribe to support ALS awareness and research.Related links:Speech Study: everythingals.org/speechprojectThe ALS Gene Carrier Study: everythingals.org/asymptomatic-studyAbout EverythingALS:EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.Stay Connected:► Website: everythingals.org► LinkedIn: /everythingals ► Facebook: /everythingals ► Subscribe for more Expert Talks: /everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS.#ALS #Nutrition #EverythingALS #ALSResearch #Neuroscience #PatientCare
ALSFRS AI Assisted Patient Reported Outcome to reduce clinical trail variability Everything ALS 2025-09-25 | Transcription of the Human and AI iteraction,0:02 — Human: Hello.0:04 — AI: Hello. Are you ready to begin the ALSFRS questionnaire? Please let me know if you'd like a detailed explanation of each question or if you're already familiar with the process and would prefer a quicker approach.0:18 — Human: I am familiar. You can be brief and I will ask you more details if I need them.0:24 — AI: Great. Let's begin. What is your answer for the speech question from 0 to 4?0:31 — Human: I have a slight deteriorated speech. I think that was a three.0:38 — AI: Got it. I've stored your answer for the speech question as a three. Next: What is your answer for the salivation question from 0 to 4?0:48 — Human: Can you remind me the descriptions of the scores?0:52 — AI: Of course. Here's the scoring for the salivation question:4 — Normal3 — Slight but definite excess of saliva in mouth...0:58 — Human: Maybe that's my case. I have a slight excess of saliva and nighttime drooling sometimes.1:11 — AI: I've recorded your answer for the salivation question as a three. Now for the swallowing question, please provide your answer from 0 to 4. Let me know if you need a reminder of the descriptions.1:25 — Human: Uh, I have normal eating habits. Nothing changed in that situation.1:37 — AI: Thank you. I've stored your answer for the swallowing question as a four. Let's proceed to the handwriting question. What is your answer from 0 to 4?1:50 — Human: Can you tell me the descriptions?1:54 — AI: Certainly. Here are the scores for handwriting: 4 — Normal 3 — Slow or sloppy; all words are legible2:03 — Human: I am clumsy but entirely readable. So yeah.2:11 — AI: Your answer for the handwriting question is recorded as a three. Now let's move to cutting food and kitchen utensils.2:21 — Human: The same. I'm slightly slow.2:26 — AI: I've recorded your answer for the cutting food and handling utensils question as a three. Now let's move on. What is your answer for the dressing and hygiene question from 0 to 4?2:39 — Human: Same—slightly slow. What would that be?2:46 — AI: I've stored your answer for the dressing and hygiene question as a three. Now, moving on to the turning in bed and adjusting bed clothes question. What's your answer from 0 to 4?3:01 — Human: Four.3:05 — AI: Your answer for the turning in bed and adjusting bed clothes has been recorded as a four. Next, please provide your answer for the walking question from 0 to 4.3:18 — Human: I am not sure for this question. Can you guide me? Help me with questions.3:25 — AI: Of course. Here are the descriptions for walking:4 — Normal walking abilities3 — Early ambulation difficulties2 — Requires assistance1 — ...3:45 — Human: I started using a cane. What would that be? A three or a two?3:54 — AI: Since you're using a cane, it would fall under “walks with assistance,” which corresponds to a two. I'll record that. I've stored your answer for the walking question as a two. Now, let's move on to the climbing stairs question.4:19 — Human: I'm not sure. Can you help me? What are the descriptions?4:25 — AI: Certainly. Here are the descriptions:4 — Normal3 — Slow, mild unsteadiness or fatigue2 — Needs assistanceBased on your situation, how would you describe your ability?4:49 — Human: I am autonomous, but I'm using the cane. Is that a one or a three? I think it's a three.4:57 — AI: Using a cane could indicate mild unsteadiness or fatigue, which would correspond to a two. Would you like me to record it as a two?5:06 — Human: I am not fatigued. I am only slow.5:11 — AI: Understood. Since you're slow but not fatigued, I'll record your answer for the climbing stairs question as a three.5:31 — Human: What does Dyspnea mean?5:34 — AI: Dyspnea refers to difficulty breathing. Here are the descriptions…5:44 — Human: I have no problems breathing.5:49 — AI: I've recorded your answer for the Dyspnea question as a four. Now moving on to Orthopnea. What's your answer from 0 to 4?6:00 — Human: What was Orthopnea again?6:04 — AI: Orthopnea refers to difficulty breathing when lying down. Here are the descriptions…6:23 — Human: I do have shortness of breath but I don't use two pillows ever. I guess that's a three.6:33 — AI: Since you experience some difficulty but don’t use more than two pillows, I’ll record your Orthopnea as a three.6:50 — Human: Yes, this question was about the use of aids for support for respiration, right?7:00 — AI: That’s correct—the respiratory insufficiency question.7:02 — Human: I don't use BiPAP. I don't.7:13 — AI: I've recorded your answer for respiratory insufficiency as a four. That completes the questionnaire. Do you have any questions?7:28 — Human: No, thank you very much. This was very fast.7:32 — AI: You're welcome. I'm glad I could assist you quickly.
Dr. Eva Feldman on head trauma, NFL and ALS Everything ALS 2025-09-12 | We recently had the honor of hosting Dr. Eva Feldman, a leading neurologist at the University of Michigan, for an insightful webinar exploring the environmental roots of ALS. In this short clip, Dr. Feldman discusses the connection between head trauma among NFL players and ALS, just one of many critical areas of research that sheds light on how repeated injuries may influence disease development.Want to dive deeper? Watch the full talk on our YouTube channel this weekend to learn more about:🔹 How certain environmental factors may contribute to ALS🔹 Cutting-edge research into genetics, toxins, and lifestyle risks🔹 What occupations carry a higher risk of ALSWatch the full webinar replay here: youtube.com/watch?v=gk9i7LqpDq0Let’s keep spreading awareness and accelerating research together. #ALS #NeurodegenerativeDiseases #Research #HealthcareInnovation #headtrauma #nfl #footballplayers #footballlife
Tracking the Invisible: How Science Is Revealing ALSs Environmental Roots with Dr. Eva Feldman Everything ALS 2025-09-09 | For this Expert Talk, we were honored to host Dr. Eva Feldman, a world-renowned neurologist at the University of Michigan.Dr. Feldman shared groundbreaking insights into the environmental roots of ALS (Amyotrophic Lateral Sclerosis) and discussed the following:🔬 The role of genetic mutations and advances in gene therapy tools🌱 The concept of the exposome – and how pesticides, pollutants and lifestyle choices may impact ALS risk🧬 The latest research on genetic testing and environmental risk factors♻️ The science behind DNA methylation, detoxification treatments, and whether their effects can be reversedTimestamps for this video:00:00:00: Welcome and introductions00:02:09 Start of Dr. Feldman's Presentation00:08:12 ALS Prevalence and Environmental Factors00:13:50 ALS Polygenic Risk Score Development00:20:31 Environmental Risk Factors for ALS00:40:56 Research Summary and Next Steps00:45:09 Audience Q&A This talk is a must-watch for patients, caregivers, researchers, and advocates who want to understand how genetics and the environment intersect in ALS research — and where the science is headed next.📢 If you find this video helpful, please like, share, and subscribe to support ALS awareness and research.Related links:Speech Study: everythingals.org/speechprojectThe ALS Gene Carrier Study: everythingals.org/asymptomatic-studyAbout EverythingALS:EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.Stay Connected:► Website: everythingals.org► LinkedIn: /everythingals ► Facebook: /everythingals ► Subscribe for more Expert Talks: /everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS.#ALS #Nutrition #EverythingALS #ALSResearch #Neuroscience #PatientCare
Pathfinders is the place for hope, connection and community Everything ALS 2025-08-27 | At EverythingALS, our Pathfinders group (led by patients themselves) creates a welcoming space for the ALS community. Through our monthly Fireside Chats, we bring together ALS patients, caregivers, and anyone impacted by ALS to share stories, ask questions, and simply be together in a supportive environment.We invite you to join us for our next Fireside Chat later today:🗓️ Date: Wednesday, August 27⌚ Time: 7 PM EST | 4 PM PST📌 Location: Online via ZoomWhether you want to listen, learn, or share your own journey, this is your space. 💙👉 Register now and be part of the conversation: everythingals.org/event-details/fireside-chat-with-pathfinders-august-27-2025#ALS #EverythingALS #Pathfinders #FiresideChat #ALSCaregivers #ALSPatients #CommunitySupport
Barriers to ALS Therapy Development: Forging a Path Through with Dr. Shafeeq Ladha Everything ALS 2025-08-27 | For this Expert Talk, we were honored to host Dr. Shafeeq Ladha, one of the nation's leading voices in ALS research and care.Dr. Ladha presented on the topic "Barriers to ALS Therapy Development: Forging a Path Through." He discussed the disease's heterogeneity and the importance of biomarkers in clinical trials. The group discussion went on to explore various research approaches, including the use of neurofilament as a biomarker, the potential of AI in analyzing large datasets and the importance of improving clinical trial designs and preclinical models.In addition, Dr. Ladha answered several questions at the end of the talk. Related links:Speech Study: everythingals.org/speechprojectThe ALS Gene Carrier Study: everythingals.org/asymptomatic-studyAbout EverythingALS:EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.Stay Connected:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS.#ALS #Nutrition #EverythingALS #ALSResearch #Neuroscience #PatientCare
Is ALS a recoverable disease? Insights from Dr. Brett Morrison Everything ALS 2025-08-17 | For this Expert Talk, we were honored to host Dr. Brett Morrison, an associate professor of neurology at Johns Hopkins University. Dr. Morrison presented on the topic "Is ALS a recoverable disease? Insight from Tofersen and the role of peripheral nervous system plasticity." He discussed the current state of ALS treatments, highlighting the approved disease-modifying therapies Riluzole and Edaravone, while emphasizing the need for further research. Dr. Morrison also mentioned ongoing clinical trials and his interest in understanding the immune system's role in peripheral nerves for potential new treatments. In addition, he answered several questions at the end of the talk. Related links:Speech Study: https://www.everythingals.org/speechp...The ALS Gene Carrier Study: https://www.everythingals.org/asympto...About EverythingALS:EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.Stay Connected:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS.#ALS #Nutrition #EverythingALS #ALSResearch #Neuroscience #PatientCare
Breathing in ALS: Insights from a Clinical Research Program for Respiratory Care in ALS Everything ALS 2025-07-29 | For this Expert Series talk, we were honored to host an expert in respiratory care for ALS, Dr. Jason Ackrivo.Dr. Ackrivo is Assistant Professor of Medicine and Neurology at the University of Pennsylvania Perelman School of Medicine and Associate Director of the Jay and Randy Fishman Program for Home Assisted Ventilation Pulmonary, Allergy, and Critical Care Division.This webinar focused on respiratory care for ALS patients, covering topics such as the impact of muscle weakness on breathing, prediction models for respiratory insufficiency, and the use of non-invasive ventilation. Various strategies for managing respiratory symptoms were discussed, including the importance of proper mask fit, pressure settings, and techniques for addressing secretions and atelectasis. Related links:Speech Study: everythingals.org/speechprojectThe ALS Gene Carrier Study: everythingals.org/asymptomatic-studyAbout EverythingALS:EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.Stay Connected:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS.#ALS #Nutrition #EverythingALS #ALSResearch #Neuroscience #PatientCare
The ALS Gene Carrier Study | Detecting Early Motor & Speech Changes in ALS Everything ALS 2025-07-26 | 🎙️ Welcome to another compelling episode of #ExpertTalk by EverythingALS!In this insightful session, Dr. James Berry (Associate Neurologist, Massachusetts General Hospital) joins Indu Navar (Founder & CEO, EverythingALS) to discuss the ongoing ALS Gene Carrier Study and its efforts to identify early motor and speech changes in individuals with ALS-related genetic markers.Learn how cutting-edge research and digital biomarkers are helping pave the way for earlier detection and better understanding of ALS progression.🔬 Topics covered:- The importance of early detection in ALS- Research methodology and participant insights- How gene carriers can get involved- The role of speech and motor data in prediction🫶🏼 Whether you're a patient, caregiver, researcher, or advocate, this conversation is full of valuable insights on the future of ALS research.Follow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #ALSResearch #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #GeneCarrierStudy #Neurology #DigitalBiomarkers #JamesBerry #InduNavar🔔 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.
Building the Motor Pathway In Vitro to Understand ALS with Dr. Arens Taga Everything ALS 2025-07-25 | The Expert Talk featured a presentation on ongoing studies for ALS detection and research into motor neuron pathways, with Dr. Arens Taga discussing his work on axon regeneration and cellular mechanisms in ALS. Dr. Taga presented research on using human induced pluripotent stem cells to model ALS in vitro, demonstrating the interactions between neurons and astrocytes and exploring potential treatments through connexin 43 and microfluidic devices. The discussion concluded with insights on the challenges and opportunities in ALS research, including the role of iPSCs in drug discovery, the potential of exercise in promoting axonal regeneration, and the unique opportunities for combining clinical and scientific work in the U.S.
ALS Expert Talk: Preserving nerve-muscle contacts to battle ALS Everything ALS 2025-06-26 | 🎙️ Welcome to another compelling episode of #ExpertTalk by EverythingALS!In this session, we’re joined by Dr. Richard Robitaille, Professor in the Department of Neuroscience at the University of Montreal. He shares critical insights into preserving nerve-muscle connections as a strategy to combat ALS.Discover how this groundbreaking research is shaping the future of ALS treatment.🔬 Dr. Robitaille dives into:The science behind nerve-muscle communicationWhy these connections matter in ALS progressionPromising therapeutic approaches on the horizonFollow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #ALSResearch #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts🔔 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.
Accelerating ALS Care andResearch through Collaborative Networks: Insights from NEALS and Beyond Everything ALS 2025-06-15 | 🎙️ Welcome to another compelling episode of #ExpertTalk by EverythingALS!In this session, we’re joined by Dr. Jinsy Andrews, Director of Neuromuscular Clinical Trials at Columbia University Irving Medical Center, as she shares critical insights on how collaborative networks like NEALS (Northeast ALS Consortium) are reshaping the future of ALS care and research.Dr. Andrews explores the transformative impact of data sharing, multicenter trials, and community engagement in accelerating therapeutic discoveries and enhancing patient access to clinical innovations. Drawing from her vast experience in leading neuromuscular trials, she also discusses the challenges and opportunities in building scalable, patient-centered research ecosystems.From improving trial design to driving equitable access, this episode offers a front-row view into the evolving landscape of ALS research—and why collaboration is key.Follow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #ALSResearch #NEALS #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExpertsIf you’re passionate about advancing ALS care and research, don’t forget to like, subscribe, and turn on notifications. Share this video to help spread awareness and support for the ALS community.
Neuromuscular Rehabilitation and ALS Recovery: Update on Tofersen for ALS Everything ALS 2025-05-31 | Welcome to another insightful episode of #ExpertTalk by EverythingALS! In this EverythingALS expert session, Dr. Sean E. Smith, MD, MPHS, a board-certified physiatrist at the ALS Center, Washington University School of Medicine in St. Louis, and Dr. Beth Hughes, a board-certified neurologic clinical specialist and Assistant Professor at the Washington University Program in Physical Therapy, provide an in-depth analysis of Tofersen's mechanism of action, clinical trial outcomes, and its integration with neuromuscular rehabilitation strategies. They emphasize the importance of a multidisciplinary approach to ALS treatment, combining pharmacological interventions with physical therapy to optimize patient outcomes.Timestamps:00:52:00 – Question: Should neurofilament be a standard test for all ALS patients?00:56:50 – Question: Has speech returned for any pALS with SOD1 or FUS mutations after treatment?01:02:18 – Discussion: Italian EAP data on Tofersen and neuroinflammation.01:06:37 – Question: Cardiovascular assessment and exercise prescription in ALS.01:08:58 – Question: Broader implications of Tofersen for other forms of ALS.01:18:44 – Question: Are rehab study patients only from Wash U or also from other hospitals like Mass General?01:31:57 – Case: A patient with TBK1 mutation and rehab program applicability.01:40:54 – Question: Can non-gene mutation patients choose rehab at their discretion?01:45:39 – Question: Could Tofersen be used prophylactically?01:47:04–01:48:57 – Shared Resources: Links to ALS PT resources and recommendations for working with trained therapists.Follow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #ALS #Tofersen #SOD1ALS #NeuromuscularRehabilitation #ALSResearch #EverythingALS #NeurodegenerativeDisease #PhysicalTherapy #ALSRecovery #ClinicalTrials #ALSCommunity #ALSAdvocacy #MotorNeuronDisease #ALSUpdates #ALSExpertsIf you’re interested in the latest developments in ALS research and treatment, hit the like button, subscribe, and turn on notifications for future updates. Share this video with others who may benefit from this essential information.
Fast-Tracking Discovery in ALS:Collaboration, Innovation, and Open Science Everything ALS 2025-05-15 | Welcome to another insightful episode of #ExpertTalk by EverythingALS! In this EverythingALS expert session, Dr. Merit Cudkowicz, a leading ALS researcher and Director of the Healey Center for ALS, answers some of the most pressing questions from the ALS community. From biomarkers to drug trials, she shares expert insights into where ALS research is headed — and what patients and families can expect.What You’ll Learn in This Episode:In this episode, Dr. Merit Cudkowicz shares expert insights on the latest in ALS research, including promising therapies like Spinogenix SPG302 and IL-2, the role of PET scans in detecting neuroinflammation, and why some ALS patients maintain normal NFL levels. She also addresses access issues around treatments like methylcobalamin and discusses how adaptive platform trials are reshaping the path to FDA approvals.Timestamps:00:57:00 – Welcome & Introductions01:03:55 – New Therapies: Spinogenix SPG302 & IL-2 in MIRACALS Study01:40:12 – Access to Vitamin B12 (Methylcobalamin) in Canada01:46:27 – Role of PET Scans in Diagnosing Neuroinflammation01:55:32 – FDA Approval Timelines for ALS Drugs01:59:00 – Normal NFL Levels in Some ALS PatientsFollow EverythingALS:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: linkedin.com/everythingals► Facebook: facebook.com/EverythingALS► Subscribe for more Expert Talks: youtube.com/c/everythingals#ExpertTalk #EverythingALS #ALSResearch #ALSResearch#DrMeritCudkowicz #NeurodegenerativeDiseases #Spinogenix #Methylcobalamin #IL2Therapy #PETScan #FDAApproval #PlatformTrials #HealeyALSPlatform #ALSCommunity #Neurofilament #ALSProgress #ClinicalTrialsIf you’re interested in the latest developments in ALS research and treatment, hit the like button, subscribe, and turn on notifications for future updates. Share this video with others who may benefit from this essential information.
Clues from Epidemiology to ALS Prevention and Treatment with Dr. Alberto Ascherio Everything ALS 2025-05-02 | ALS Natural History: How to Turn Real-World Experience into Real Progress in ALS Research!🎙️ Featuring Dr. Alberto Ascherio, MD, DrPH, Professor of Epidemiology and Nutrition at the Harvard T.H. Chan School of Public Health and a Professor of Medicine at the Harvard Medical School.In this insightful #ExpertTalk, Dr. Ascherio spoke about:-- Longitudinal epidemiological studies unravel the causes of chronic diseases-- Could infections play a role in causing ALS-- Dietary factors may contribute to prevention and treatmentAnd, during the Q&A portion of talk, here are some of the questions asked:-- Is there an epidemiological component of the Million Veterans Program that can capture insights into the prevalence and potential causes of ALS?-- Is there a suggested dosage for vitamin E to see a benefit/reduce ALS risk?-- What are the plans to validate these potential influences on ALS risk? Are there plausible hypotheses behind these connections with vitamin E and beta carotene?-- What is the recommended methylcobalamin vitamin B dosage to be injected?-- What type of flaxseed oil should we buy, and where would we find it? How was the proposed dose of 8g/day chosen?-- Have you looked at the Omega 3 and 6 in hemp hearts or hemp protein? -- If it is the case that some supplements could reduce the risk of ALS onset, why is it that there are so few reversals?-- In neurodegenerative diseases, there have been historically high barriers to finding ALS patients to follow over a longitudinal period. What has changed in the field of epidemiology to evolve the understanding of prevalence?Stay Connected:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS.#ALS #Neurology #NaturalHistory #ALSResearch #DavidWalk #EverythingALS #Neuroscience #OpenData #ClinicalResearch #RealWorldEvidence
ALS Natural History: How to Turn Real-World Experience into Real Progress in #ALS Research. Everything ALS 2025-04-21 | ALS Natural History: How to Turn Real-World Experience into Real Progress in ALS Research!🎙️ Featuring Dr. David Walk, Professor & Head, Neuromuscular Division - Department of Neurology, University of MinnesotaIn this insightful #ExpertTalk, Dr. David Walk dives into the importance of natural history studies in ALS—how patient experiences and real-world data can fuel groundbreaking research and accelerate progress toward better diagnosis, treatment, and care for individuals living with ALS.Discover how clinicians, researchers, and people with ALS are working together to build a more accurate picture of the disease and drive innovation in neurology. This talk is a must-watch for scientists, students, clinicians, caregivers, and anyone passionate about transforming ALS care through data and collaboration.Stay Connected:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS.#ALS #Neurology #NaturalHistory #ALSResearch #DavidWalk #EverythingALS #Neuroscience #OpenData #ClinicalResearch #RealWorldEvidence
Brain Health and ALS with Dr. Hande Ozdinler Everything ALS 2025-04-03 | Brain Health and ALS with Dr. Hande Ozdinler🧠 Featuring Dr. Hande Ozdinler, Associate Professor of Neurology, Northwestern University & Founding Director, Ozdinler LabJoin us for yet another fascinating #experttalk with Dr. Hande Ozdinler, a pioneering ALS researcher known for her work on upper motor neurons and neurodegeneration. In this talk, Dr. Ozdinler explores the critical link between brain health and ALS, shedding light on how protecting and understanding the brain can unlock new approaches to treating ALS and other neurodegenerative diseases.Learn how her lab is working to change the narrative around ALS, focusing on the brain—not just the muscles—and what this means for future therapies and patient outcomes.🌟 A must-watch for researchers, clinicians, caregivers, and advocates passionate about neuroscience, innovation, and hope.Stay Connected:► Website: everythingals.org► Twitter: https://x.com/everything_als► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS.#ALS #BrainHealth #HandeOzdinler #EverythingALS #Neuroscience #Neurodegeneration #UpperMotorNeurons #ALSResearch #HopeThroughScience
