EverythingALS

Exciting Webinar Tonight – Don't Miss Out! Join us this evening at 7 PM ET for a special webinar featuring Dr. Michael Benatar, MD, PhD, a leading expert in ALS and neurodegenerative disorders. Dr. Benatar is a Professor of Neurology and Public Health Sciences at the University of Miami Miller School of Medicine, where he also serves as Chief of the Neuromuscular Division and Vice Chair for Clinical and Translational Research in the Department of Neurology. He will be discussing The Miami Framework for ALS & Related Neurodegenerative Disorders, offering insights that are invaluable for researchers, clinicians, and anyone passionate about advancements in ALS research and care. ?? When? Tonight at 7 PM ET/4 PM PT?? ?? Topic? The Miami Framework for ALS & Neurodegenerative Disorders?? ??? Speaker? Dr. Michael Benatar, MD, PhD Register now and be part of the conversation on groundbreaking approaches to ALS and neurodegenerative disorders. ?? Link to registration: https://lnkd.in/e5d9EW7C #ALS #Neurology #Webinar #ALSResearch #NeurodegenerativeDisorders #ClinicalResearch #HealthcareInnovation

?? Last Call! ?? The Pharma & Patient USA event in Boston gets underway today and goes through tomorrow. Industry leaders will come together in a bid to transform the future of healthcare and clinical trials. ?? Don't miss your chance to hear from EverythingALS Executive Director Christian Rubio speaking alongside Annlouise Regina Assaf from Pfizer and Teri Wright from Eli Lilly and Company as they share game-changing insights on accelerating life-saving therapies and giving patients more control over their health data. ?? ??? Tickets are going fast but you can still grab yours here: https://lnkd.in/g6hZczQe Join us in reshaping the clinical trial landscape. Your participation could make all the difference! ???? #PharmaPatientUSA #HealthcareInnovation #ClinicalTrials #PatientEmpowerment #LifeSciences #REPatientUSA

?? Happy Friday everyone! ?? Last week, our amazing Pathfinder, Janie Gobeli, attended the ALS TDI Summit 2024, followed by the inspiring White Coat Affair Gala. Both events were incredible opportunities to connect with others in the ALS community and support the mission to find effective treatments for ALS. The ALS TDI Summit is a powerful, free conference aimed at educating and empowering attendees with the latest updates on ALS research and treatment developments. It's inspiring to see so many individuals, families and researchers come together in this fight against ALS. The White Coat Affair Gala was the perfect finale to the weekend, filled with cocktails, dinner, live music, and a deep sense of camaraderie. One of the highlights of the evening was a special performance by John Driskell Hopkins of the Zac Brown Band, who was diagnosed with ALS in 2021. His resilience and passion led him to create Hop On A Cure, a charity dedicated to funding research for ALS. We’re so proud to have been a part of this important weekend, filled with hope, music, and a shared determination to advance ALS research. ?? #ALS #ALSTDI #WhiteCoatAffair #ALSResearch #HopOnACure #EverythingALS #ALSCommunity

Please join us tomorrow evening at 7 PM EST for a special virtual Fireside Chat! We're excited to feature EverythingALS Spiritual Guide McFinn Lovere and Dr. Murray Abramson, MD, MPH, an internal medicine and infectious diseases expert with more than 25 years of clinical trial and drug development experience. Don't miss this insightful conversation on the future of healthcare and clinical innovation. Register now to secure your spot: https://lnkd.in/eWtk5ZsC #Healthcare #ClinicalTrials #VirtualEvent #Innovation #FiresideChat #ALS

?? What an incredible evening in New Orleans! ????? Last Friday, one of our dedicated Pathfinders from EverythingALS, Joe Redmond, had the honor of attending Gleason Gras, a wonderful event filled with live music, amazing food and drinks, and both silent and live auctions. Each year, Gleason Gras raises awareness for ALS and supports the incredible work of the Team Gleason Foundation. Team Gleason, founded by former New Orleans Saints player Steve Gleason, is on a mission to enhance the lives of people living with ALS. Through innovative technology, essential equipment, and life-enriching experiences, they continue to empower ALS patients to not only live but thrive after diagnosis. Steve Gleason's courage and determination, especially after his ALS diagnosis in 2011, is a testament to the strength of the human spirit. He continues to inspire the ALS community — and beyond — proving that life can be lived to the fullest, even in the face of adversity. Thank you, Team Gleason, for your unwavering commitment to making a difference! ?? #EverythingALS #TeamGleason #GleasonGras #ALS #Awareness #Empowerment #Innovation #ALSCommunity

?? Exciting News! ??? We’re thrilled to announce that our very own Christian Rubio will be speaking at the Council of Medical Specialty Societies and National Health Council Patient-Centered Partnerships Summit this coming Tuesday! ?? Taking place at the Johns Hopkins University Bloomberg Center in Washington, DC, the summit will focus on "Building Meaningful Collaboration to Advance Patient Care and Research." Christian, who serves as the Executive Director of EverythingALS, will be discussing the transformative role of technology in patient engagement and research — a topic that’s central to our mission of improving care and outcomes for the ALS community. This important event, funded by the Patient-Centered Outcomes Research Institute (PCORI), brings together leaders dedicated to advancing patient care through meaningful collaboration. We’re honored to be part of this critical conversation! ?? #PatientCare #Research #TechnologyInHealthcare #PCORI #HealthSummit #Collaboration #PatientEngagement #ALSResearch #EverythingALS

Please join our CMO, Matthew Davis, as he presents at @EverythingALS on Wednesday, October 2nd.

?? Join us tomorrow for a must-attend webinar on ALS research! ?? We're excited to host Dr. Matthew Davis, Chief Medical Officer at Neuvivo, for an insightful session titled "What's Old is New Again: Role of the Innate Immunity and its Biomarkers in ALS." ?? With more than 25 years of experience, Dr. Davis has been at the forefront of developing groundbreaking treatments across pharmaceuticals and biotech. He will share his deep knowledge on the role of the innate immune system in ALS, drawing from his work at Neuvivo and previous roles where he led successful launches and approvals of new therapies. ??? Date: October 2, 2024?? ? Time: 4PM PT / 7PM ET?? ?? Speaker: Dr. Matthew Davis, Chief Medical Officer, Neuvivo? Don't miss this opportunity to learn more about cutting-edge ALS research! ?? Sign up now: https://lnkd.in/gCsi4irb #ALSResearch #Webinar #Immunology #Neuvivo #ALS #Biomarkers #HealthcareInnovation #MedicalResearch #Biotech

Friday Facts: Every 90 minutes, someone is diagnosed with ALS -— a devastating disease with no cure. But together, we can change that. Join us in the fight to find a cure and bring hope to ALS patients everywhere. Your support makes all the difference. ?? Learn more at EverythingALS.org! #EndALS #HopeForACure #JoinTheFight

Living with ALS "feels like my nerve pathways are filled with honey," says one patient in this powerful clip. Hear his story and others like it in the full video, where patients discuss their experiences and explore the potential of implanted brain-computer interfaces (BCIs) to improve their lives. Watch now to gain insight into the future of ALS treatment from the FDA/NIH Workshop: Developing Implanted BCI COAs to Demonstrate Benefit. Check out the full workshop, featuring EverythingALS founder and CEO Indu Navar, here: https://lnkd.in/eMF7Pqt7 #ALS #BrainComputerInterface #BCI #ALSAwareness #NeuroTech #PatientStories #ALSResearch #FDA #NIH #InnovationInHealthcare