Videos

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 there Citizen 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: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/company/everythingals ► Facebook: https://www.facebook.com/everythingals ► Subscribe for more Expert Talks: https://www.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.

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: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/company/everythingals ► Facebook: https://www.facebook.com/everythingals ► Subscribe for more Expert Talks: https://www.youtube.com/@EverythingALS #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #PrimeC #Biomarkers #ClinicalTrials #ALSTreatment #ALSInnovation #Neurology #SurvivalResearch #JeffreyRosenfeld #AlonBenNoon #ClinicalResearch

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 actionable Citizen 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: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/company/everythingals ► Facebook: https://www.facebook.com/everythingals ► Subscribe for more Expert Talks: https://www.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.

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: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/company/everythingals/ ► Facebook: https://www.facebook.com/everythingals ► Subscribe for more Expert Talks: https://www.youtube.com/@EverythingALS #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #ClinicalTrials #SporadicALS #TDP43 #PioneerALS #VectorizedAntibodies #Neurology #ALSTreatment #ALSInnovation #VectorY

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 background Citizen 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: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/company/everythingals ► Facebook: https://www.facebook.com/everythingals ► Subscribe for more Expert Talks: https://www.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.

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: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: 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 #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.