Videos

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 & Introductions 01:03:55 – New Therapies: Spinogenix SPG302 & IL-2 in MIRACALS Study 01:40:12 – Access to Vitamin B12 (Methylcobalamin) in Canada 01:46:27 – Role of PET Scans in Diagnosing Neuroinflammation 01:55:32 – FDA Approval Timelines for ALS Drugs 01:59:00 – Normal NFL Levels in Some ALS Patients Follow EverythingALS: ► Website: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #ALSResearch #DrMeritCudkowicz #NeurodegenerativeDiseases #Spinogenix #Methylcobalamin #IL2Therapy #PETScan #FDAApproval #PlatformTrials #HealeyALSPlatform #ALSCommunity #Neurofilament #ALSProgress #ClinicalTrials If 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.

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 treatment And, 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: 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

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

Brain Health and ALS with Dr. Hande Ozdinler 🧠 Featuring Dr. Hande Ozdinler, Associate Professor of Neurology, Northwestern University & Founding Director, Ozdinler Lab Join 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: 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 #BrainHealth #HandeOzdinler #EverythingALS #Neuroscience #Neurodegeneration #UpperMotorNeurons #ALSResearch #HopeThroughScience

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