Videos

🎙️ 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 communication Why these connections matter in ALS progression Promising therapeutic approaches on the horizon 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 #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.

🎙️ 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: 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 #ALSResearch #NEALS #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts If 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.

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: 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 #ALS #Tofersen #SOD1ALS #NeuromuscularRehabilitation #ALSResearch #EverythingALS #NeurodegenerativeDisease #PhysicalTherapy #ALSRecovery #ClinicalTrials #ALSCommunity #ALSAdvocacy #MotorNeuronDisease #ALSUpdates #ALSExperts 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.

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