Videos

🎙️ 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: 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 #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.

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.

🎙️ 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.