Videos

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 Minnesota In 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: https://www.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

Dr. Hande Ozdinler, Associate Professor of Neurology at Northwestern University - The Feinberg School of Medicine of Medicine, shared groundbreaking insights on "Brain Matters in ALS." Her research focuses on upper motor neurons, which play a critical role in ALS, HSP, and PLS. Her lab has pioneered new tools for studying their health and advancing drug discovery. This webinar focused on the importance of research on ALS, particularly the role of upper motor neurons in the disease, and the potential of gene therapy as a treatment approach. The discussion also covered the development of a new platform using diseased upper motor neurons to assess the response of neurons to drug treatment, and the potential benefits of combining different drugs to treat neurodegenerative diseases. The conversation ended with expressions of gratitude and farewells, and discussions about the potential impact of sleep apnea on ALS patients and the availability of treatments in different countries.

Is there a role for nutritional guidance in the treatment of ALS? In this #experttalk, leading specialists explore how nutrition impacts ALS progression, symptom management, and patient well-being. Speakers: Dr. Terry Heiman-Patterson – Professor of Neurology at Temple University, renowned for her extensive research and clinical expertise in ALS. Dr. Ikjae Lee – Assistant Professor of Neurology at Columbia University, focusing on ALS patient care and research. Dr. Gina Tripicchio, PhD, MSEd – Associate Professor in the Department of Social and Behavioral Sciences at Temple University, specializing in public health and nutrition. 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: https://www.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

Join us for an insightful discussion on CNM-Au8 Survival, Neurofilament Light Chain (NFL) Biomarker, and Phase 3 Updates with Mr. Rob Etherington, CEO of Clene Nanomedicine, and Dr. Marjan Sepassi, Clinical Development Lead. ⏱ Timestamps: 00:00 – Introduction 02:15 – Overview of CNM-Au8 and ALS Treatment 08:30 – Survival Benefit and Clinical Trial Insights 15:45 – Neurofilament Light (NFL) Biomarker Explained 22:10 – Phase 3 Update: Key Findings & Next Steps 30:00 – Q&A Session 💡 Why This Matters: CNM-Au8 is a promising investigational nanocatalytic therapy designed to enhance neuronal energy metabolism and reduce oxidative stress in neurodegenerative diseases like ALS. 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: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals #ALSResearch #CNMAu8 #Neurofilament #ALSTreatment #EverythingALS

Join us for an insightful session with Laura P.W. Ranum, Ph.D., as she discusses how Repeat Associated Non-AUG (RAN) proteins play a role in C9orf72 ALS/FTD and their potential as therapeutic targets. This talk is part of the EverythingALS Expert Talk Series, bringing you the latest research and advancements in ALS and neurodegenerative diseases. ⏱ Timestamps: ⏱️ 00:00 – Introduction to EverythingALS & Speaker Bio ⏱️ 02:15 – Understanding C9orf72 ALS/FTD: The Basics ⏱️ 05:40 – What Are RAN Proteins? ⏱️ 12:30 – How RAN Translation Contributes to ALS/FTD ⏱️ 18:45 – Targeting RAN Proteins for ALS Therapy ⏱️ 25:10 – Research Updates & Clinical Implications ⏱️ 32:20 – Q&A with Dr. Laura P.W. Ranum 💡 Why This Matters: C9orf72 mutations are the most common genetic cause of ALS and FTD. Understanding RAN proteins could open new doors for therapeutic strategies to combat these devastating diseases. 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: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals #EverythingALS #ALSResearch #Neurodegeneration #C9orf72 #RANProteins #LauraRanum #ALS #FTD

This #experttalk, hosted by EverythingALS, explores how cutting-edge technology, data-driven research, and community engagement are accelerating the fight against ALS. The discussion highlights the ALL ALS initiative and how individuals can contribute to groundbreaking research. ⏱ Timestamps: 00:00 - Introduction 01:15 - What is ALL ALS? 04:30 - The Power of AI & Technology in ALS Research 08:20 - Community-Driven Research & Patient Participation 12:45 - Breakthroughs & Key Findings 16:30 - How You Can Get Involved 20:00 - Q&A & Closing Thoughts 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: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: / everythingals ► Facebook: / everythingals ► Subscribe for more Expert Talks: / everythingals Don’t forget to: ✅ Like this video if you found it helpful! ✅ Subscribe to our channel for more expert talks and updates: [EverythingALS YouTube Channel]. ✅ Share this video to spread awareness and support ALS research. #ALS #MolecularSubtypes #TDP43 #Neurodegeneration #EverythingALS #ExpertTalk