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Co-hosted by: Future of Digital Biomarkers Summit August 10th & 11th, 2025 We are excited to host our third annual Digital Biomarkers and Endpoints Summit Agenda Attendees Location Monday, August 11th 2025 Agenda Johnson & Johnson - 320 Bent St, Cambridge, MA 02141 View Agenda Anchor 7 View Agenda Attendees & Speakers Anchor 6 Consortia Members Lead Scientific Collaborators Strategic Partners Eveything ALS Team Eric William Dane Award-Winning Actor Television & Film Performer Eric William Dane is an award-winning American actor from San Francisco, California, celebrated for his dynamic performances in both television and film. He is best known for his portrayal of Dr. Mark Sloan—nicknamed “McSteamy”—on the long-running ABC medical drama Grey’s Anatomy, a role that earned him a Satellite Award and a Screen Actors Guild Award as part of the ensemble cast. Dane further demonstrated his versatility as Captain Tom Chandler in the post-apocalyptic series The Last Ship and as the emotionally complex Cal Jacobs in HBO’s critically acclaimed drama Euphoria. With a career spanning more than two decades, Dane has become known for infusing every role with intensity, charisma, and depth. His performances consistently resonate with audiences and critics alike, cementing his place as one of contemporary television’s most compelling actors. Off screen, he continues to pursue roles that challenge convention and showcase his impressive emotional range. Learn More Anchor 3 Fiona Elwood, Ph.D Vice-President, Disease Area Lead, Neurodegeneration Johnson & Johnson Fiona Elwood is Vice President and Neurodegeneration Disease Area Leader at Janssen R&D. She specializes in tau biology and neurodegenerative research, leveraging human cell models and advanced screening for target discovery. Previously, she was Interim Global Head of Neuroscience at Novartis. Elwood holds a PhD in neuroscience from the University of London and completed her postdoc at Stanford. Charmaine DeManuele, Ph.D Vice-President, R&D Data Science & Digital Health Johnson & Johnson Charmaine Demanuele, Ph.D. is Vice President of R&D Data Science & Digital Health at Johnson & Johnson Innovative Medicine. She leads global efforts to apply AI, machine learning, and real-world data in early clinical development, with a focus on digital biomarkers, predictive analytics, and trial-enabled digital endpoints for neuroscience and rare diseases. Previously, she held senior roles at Pfizer, advancing AI/ML and decentralized trial strategies. Nicholas Seneca, Ph.D Scientific Director, Precision Medicine AbbVie Nicholas Seneca, Ph.D. is Scientific Director of Precision Medicine at AbbVie, where he leads biomarker integration and translational science in clinical development. With expertise in neuroscience, molecular imaging, pharmacology, and trial design, he focuses on identifying patient subgroups for targeted therapies. Prior to AbbVie, he held roles at Novartis and PMOD Technologies, contributing to biomarker-driven drug development. His work advances personalized medicine through data-driven insights and cross-functional collaboration. Josh Cosman, Ph.D Director, Digital Health Strategy AbbVie Josh Cosman, Ph.D. is an interdisciplinary neuroscientist with two decades of experience developing neurophysiological and behavioral markers of cognition and motor function in aging and neurological disorders. Over the past ten years, he has led biomarker and functional marker development in both digital health and pharma, using scalable tools and consumer devices. He also serves as Industry Co-Director for the Critical Path for Parkinson’s Digital Drug Development Tools consortium and is active in several pre-competitive digital health and translational neuroscience initiatives. Bryan Boggs, Pharm.D. Head of Regulatory Affairs Acurastem Brian Boggs is a seasoned Regulatory Affairs executive at Acurastem, guiding regulatory strategy for novel neurodegenerative therapies. With over 20 years of experience, he previously served as VP of Regulatory Affairs at QurAlis, leading global IND/CTA filings and regulatory engagement. At Acurastem, he ensures regulatory readiness for early-stage ALS programs. Joel Schwartz, Ph.D Scientific Director - Digital Biomarkers Bristol Myers Squibb Joel Schwartz, Ph.D. is Scientific Director of Digital Biomarkers in the Neuroscience Translational Research Center at R&D. He leads strategy for developing and validating digital biomarkers to support neuroscience drug discovery and clinical trials. With prior roles at Biogen and Pfizer, he brings deep experience in translating digital measures into reliable endpoints for neurodegenerative diseases. Jason Osik, Ph.D Associate Director, Digital Health Bristol Myers Squibb Jason Osik, Ph.D. is Associate Director of Digital Health at Bristol Myers Squibb, where he leads digital biomarker development and advanced analytics for clinical trials. With a Ph.D. in Neuroscience from Brandeis and prior roles at Biogen and Boston Scientific, he brings expertise in machine learning, neurology, and real-world data to advance precision drug development. Lars Ittner, MD Co-Founder and Chief Medical Officer Celosia Therapeutics Lars Ittner, M.D., Ph.D. is Co-Founder and Chief Medical Officer of Celosia Therapeutics and Director of the Dementia Research Centre at Macquarie University. With over 20 years of neuroscience research experience, he focuses on Alzheimer’s disease and neuronal hyper-excitation. At Celosia, he leads clinical strategy for gene therapies targeting TDP-43 pathology in ALS and related disorders. Brian Winger, Ph.D Associate Vice-President, Digital Health Eli Lilly & Company Brian Winger, Ph.D. is Senior Advisor of Translational Technology & Innovation at Eli Lilly’s Digital Health Office. With over 20 years at Lilly and a background in analytical chemistry, he focuses on developing and validating digital biomarkers to support novel digital endpoints in drug development. He brings deep expertise in mass spectrometry and translational innovation to advance Lilly’s clinical portfolio. Guofa Shou, Ph.D Digital Health R&D Leader Eli Lilly & Company Guofa Shou, Ph.D. is a digital health R&D leader at Eli Lilly with over 15 years of experience in physiological signal research. He leads the development and integration of digital health technologies and biomarkers into clinical trials across cardiometabolic, neurodegenerative, oncology, immunology, and OSA indications. His work focuses on enabling precise, objective, and scalable health measurements to advance meaningful insights in clinical outcomes. Ann Marie Hake, MD Executive Director, Medical - Digital Health Eli Lilly & Company Ann Marie Hake, M.D. is a board-certified neurologist and clinical research physician in the Digital Health R&D group at Eli Lilly, where she also serves as Vice Chair of the Lilly Bioethics Advisory Committee. With fellowship training in neurodegeneration and expertise in medical informatics, she has led clinical trials and provided medical leadership in neurodegeneration and migraine. She is also an adjunct faculty member at Indiana University School of Medicine, where she continues to serve on the IRB and sees neurology patients twice a month. Michelle Cecić Director, Clinical & Technical Operations Mitsubishi Tanabe Pharma America Michelle Cecić is Associate Director of Clinical & Technical Operations at Mitsubishi Tanabe Pharma America, where she leads clinical trial planning and execution for neurology programs, including ALS and rare diseases. With expertise in clinical operations, site management, and regulatory compliance, she has contributed to multiple ALS and edaravone-related studies. Michelle works cross-functionally to ensure operational excellence and accelerate the delivery of life-changing therapies. Amanda Goldberg, MPAS, PA-C Medical Science Liaison Mitsubishi Tanabe Pharma America Amanda Goldberg, PA-C is a Medical Science Liaison at Mitsubishi Tanabe Pharma America, with 19 years of healthcare experience, including over 12 years as a Physician Associate in adult and pediatric neurosurgery and neurocritical care. Now in her first year as an MSL, she supports medical engagement and scientific exchange in ALS and Parkinson’s disease, bringing strong clinical insight and passion to the neuroscience field. Shiran Zimri, Ph.D VP of R&D and Country Lead NeuroSense Therapeutics Shiran Zimri, Ph.D. is Vice President of R&D and Country Lead for Canada at NeuroSense Therapeutics, where she oversees research programs in ALS, Parkinson’s, and Alzheimer’s diseases. With over 12 years of experience in preclinical drug development, she applies multidisciplinary approaches to neurodegenerative research. Dr. Zimri has published widely, presented at global conferences, and is an active member of BIO, Bashaar, and Midaat. She holds a Ph.D. in Neurobiology from Tel Aviv University. Matthew Davis, MD, R.Ph Chief Medical Officer Neuvivo Matthew Davis is a biopharmaceutical executive with 25+ years’ experience in developing, approving, and launching small molecules, biologics, and devices. He has served as COO and CMO at Tiziana Life Sciences, and as CMO at Endo Pharmaceuticals and Lupin. At URL Pharma, he secured three NDA approvals and invented all 17 Orange Book-listed patents for Colcrys®, contributing to its $2B acquisition by Takeda. Dr. Davis holds a Pharmacy degree from Temple, an M.D. from the Medical College of Pennsylvania, and completed surgical and urology training at Brown and Washington Hospital Center. Henk Schuring, Pharm.D. Chief Regulatory & Commercialization Officer Prilenia Therapeutics Henk Schuring is a senior pharmaceutical executive with 30+ years’ experience and a strong track record in rare diseases. A trained pharmacist, he has helped develop several “first treatments” and held regional and global roles in Regulatory Affairs and Commercial. At Prilenia, he shapes regulatory pathways and guides clinical program development, advancing therapies for underserved patients. Kasper Roet, Ph.D Founder, Chief Executive Officer Quralis Corporation Kasper Roet, CEO and co-founder of QurAlis and EnClear Therapies board member, is a neuroscientist specializing in gene therapies and stem cell-based precision medicine for ALS. He earned his Ph.D. from the Netherlands Institute for Neuroscience, trained at Johnson & Johnson and Harvard, and co-founded QurAlis with Harvard professors Clifford Woolf and Kevin Eggan. His honors include the Milton Safenowitz Fellowship, Fierce15 Biotech award, and Henri Termeer Transatlantic Connections Award. Tom Bowman, MD, MPH Medical Director & VP Clinical Sciences QurAlis Corporation Tom Bowman, MD, MPH is Medical Director and Vice President of Clinical Sciences at QurAlis Corporation, where he leads clinical development strategies for precision ALS and neurodegenerative therapies. With expertise in early-phase trial design, regulatory planning, and translational medicine, he guides programs from preclinical research through execution. He has worked in both biotech and large pharma, contributing to rare disease and RNA-based therapeutic programs. Dr. Bowman is committed to advancing patient-centered treatments for currently untreatable conditions. Brian Radecki Co‑Founder, Chief Executive Officer Rapa Therapeutics Brian Radecki is the Co-Founder and Chief Executive Officer of Rapa Therapeutics, a clinical-stage biotech developing cell therapies for cancer and ALS. Formerly CFO and EVP at CoStar Group, he helped grow it into a multibillion-dollar public company before moving into life sciences. Since founding Rapa in 2016, he has led the company from startup to state-of-the-art labs and advanced clinical trials. Radecki is also active as an angel investor in healthcare innovation. Daniel Fowler, MD Co-Founder, Chief Medical Officer Rapa Therapeutics Daniel Fowler, MD is the Co-Founder and Chief Medical Officer of Rapa Therapeutics, where he leads the development of next-generation RAPA-T cell therapies for cancer and ALS. A former National Cancer Institute physician-scientist, he pioneered research on regulatory T cells and Th2 cells to modulate immune responses in disease. His team developed hybrid T cells (RAPA-501) demonstrating safety and biological activity in ALS patients. Dr. Fowler’s work is advancing Phase 2/3 trials and expanded access programs. Matthew Wipperman, Ph.D Associate Director, Digital Medicine Regeneron Pharmaceuticals Matthew Wipperman, Ph.D is Associate Director of Digital Medicine at Regeneron Pharmaceuticals, where he leads strategy for sensor-derived biomarkers to transform trial outcome measures. He contributes to biomarker design, exploratory data analysis, and the discovery of innovative clinical endpoints. With 15 years of scientific and clinical research experience, including work at Sloan Kettering, he builds cross-functional collaborations to ensure clinical and regulatory success. Dr. Wipperman holds advanced degrees in chemistry and clinical science. Oren Levy, MD, Ph.D Medical Director, Early Clinical Development Regeneron Pharmaceuticals Oren Levy, MD, Ph.D is Medical Director of Early Clinical Development at Regeneron Pharmaceuticals, focusing on neurodegenerative disease programs. He integrates digital biomarkers, physiological signal-based assessments, and innovative trial design into early-phase studies. Dr. Levy has published research on remote respiratory monitoring in ALS and mobile gait analysis in Parkinson’s disease. He is dedicated to developing objective, scalable clinical endpoints to enhance trial precision and efficiency. Andreas Kalmes, Ph.D Vice President, Drug Development Revalesio Therapeutics Andreas Kalmes is Vice President of Drug Development at Revalesio Therapeutics, leading their ALS clinical program since 2015. He has over 20 years of experience in biotech and pharma, with previous leadership roles at Amgen and Immunex managing drug programs from discovery to clinical trials. Dr. Kalmes earned his Ph.D. from the University of Mainz in 1993 and did postdoctoral research at the University of Washington. At Revalesio, he focuses on advancing RNS60 and other treatments for neurodegenerative and inflammatory diseases. Irina Antonijevic, MD, Ph.D Chief Medical Officer, Trace Neuroscience Dr. Irina Antonijevic is Chief Medical Officer at Trace Neuroscience with over 30 years of experience in psychiatry, neurology, academia, and drug development. She was previously CMO at EveryONE Medicines, focusing on individualized therapies for rare neurogenetic mutations, and at Triplet Therapeutics, working on treatments for DNA repeat expansion disorders. She has also held senior roles at Wave Life Sciences, vasopharm GmbH, Sanofi Genzyme, Lundbeck, and Schering AG. Dr. Antonijevic trained at the Max Planck Institute of Psychiatry and earned her M.D. and Ph.D. from the University of Edinburgh. Sanjay Chandriani, Ph.D Head of Translational Sciences Trace Neuroscience Sanjay Chandriani leads Translational Sciences at Trace Neuroscience, focusing on developing biomarkers and bridging early scientific discoveries to clinical use, especially for ALS and neurodegenerative diseases. With a background in molecular biology, he has contributed to research published in scientific journals. His work centers on turning basic science into new therapies for complex neurological conditions. At Trace Neuroscience, he works with a multidisciplinary team to create innovative solutions for unmet needs in neurodegeneration. Ilan McNamara, Ph.D Vice-President, Regulatory Affairs VectorY Therapeutics Ilan McNamara is Vice President of Global Regulatory Affairs at VectorY, leading regulatory strategy for the company’s programs. With expertise in neuroscience, molecular biology, and regulatory science, he has extensive experience guiding therapies through clinical development. Before VectorY, Ilan held senior regulatory roles at Prevail Therapeutics, working on AAV-based treatments for neurodegenerative diseases. He specializes in regulatory submissions, global agency interactions, and manufacturing transitions, dedicated to advancing safe and effective therapies through science-driven regulatory innovation. James Berry, MD, MPH Chief, Division of ALS and MND Massachusetts General Hospital James Berry is the Winthrop Family Scholar in ALS Sciences, Chief of the Division of ALS and Motor Neuron Diseases, and Director of the Massachusetts General Hospital (MGH) ALS clinic. He has expanded care beyond the clinic through programs like ALS House Call and video tele-visits. As Director of the MGH Neurological Clinical Research Institute, he leads national and global trials focused on biomarkers of inflammation, mobile health, and digital phenotyping to advance ALS therapies while easing patient burden. He also directs the Mass General Brigham Neurodegenerative Clinical Research Fellowship and serves on leadership panels for NEALS and the CDC. Ernest Fraenkel, Ph.D Department of Biological Engineering Massachusetts Institute of Technology Ernest Fraenkel is the Grover M. Hermann Professor in Health Sciences and Technology at MIT and an Associate Member of the Broad Institute. He leads the Fraenkel Lab, combining computational and experimental systems biology to find new therapies for diseases like ALS, Huntington’s, glioblastoma, cancer, and diabetes. Dr. Fraenkel earned his A.B. in Chemistry and Physics summa cum laude from Harvard and his Ph.D. in Biology from MIT. His research focuses on using multi-omics data to map molecular pathways and identify drug targets. Anchor 1 Lyle W. Ostrow, MD, PhD Associate Professor of Neurology, Lewis Katz School of Medicine Neurologist, MDA/ALS Center of Hope Temple University Lyle Ostrow is Associate Professor of Neurology at Temple University and leads the MDA/ALS Center of Hope. He directs the ALS Postmortem Research Core with the CDC’s National ALS Registry, advancing biomarker discovery. A physician-scientist trained at Johns Hopkins, he chairs the Department of Defense ALS Research Program, managing a $40M+ budget. Dr. Ostrow is known for his clinical leadership and efforts to improve ALS care and therapies. Merit Cudkowicz, MD, MSc Executive Director, Mass General Brigham Neuroscience Institute Massachusetts General Hospital Merit Cudkowicz is Executive Director of the Mass General Brigham Neuroscience Institute, Director of the Sean M. Healey & AMG Center for ALS, and Professor of Neurology at Harvard Medical School. A leader in ALS research, she co-founded the Northeast ALS Consortium and leads the HEALEY ALS Platform Trial to speed therapy development. Dr. Cudkowicz has pioneered antisense oligonucleotide treatments and adaptive trial designs. She holds degrees from MIT and Harvard and has received major awards like the Sheila Essay ALS Award and the Forbes Norris Award. Eduardo R. Locatelli, MD, MPH Physician Executive Director & Neurologist Director, Cathy J. Husman ALS Center NSU Neuroscience Institute Eduardo R. Locatelli is Physician Executive Director of the NSU Neuroscience Institute and leads the Cathy J. Husman ALS Center of Excellence at NSU Health, Florida. With over 30 years as a U.S.-licensed physician and researcher, he holds an MD, MPH, Neurology Board Certification, and Neuroimaging Diplomate. Dr. Locatelli focuses on improving ALS patient care through leadership and strategic planning. He helped establish a multidisciplinary ALS clinic with Mass General Hospital and secured over $10 million in philanthropy to develop the ALS Center. He also leads initiatives in medical informatics, quality improvement, and ethics. Ed Lein, Ph.D Senior Investigator Allen Institute for Brain Science Dr. Ed S. Lein is a Senior Investigator at the Allen Institute for Brain Science and Affiliate Professor at the University of Washington. He earned his B.S. in biochemistry from Purdue and Ph.D. in neurobiology from UC Berkeley, with postdoctoral work at the Salk Institute. Since joining the Allen Institute in 2004, he has led projects like the Allen Mouse Brain Atlas and human brain atlases. His research focuses on single-cell genomics and spatial transcriptomics to map brain cell types, study disease vulnerability, and develop precision therapies. He also serves on BICAN and Human Cell Atlas committees. Anchor 2 Lou Warnett, MSc Healthcare Data Scientist Amazon Web Services (AWS) Lou Warnett is a Healthcare Data Scientist at Amazon Web Services (AWS), helping healthcare and life sciences organizations use machine learning, generative AI, and cloud analytics to drive innovation. He partners globally with academic centers, biotech firms, and health systems to support precision medicine, clinical research, and genomics on AWS. Lou holds a Master’s in Mathematics and Computer Science from Imperial College London. His expertise includes AI solution design, multi-modal data integration, and advanced modeling focused on improving patient outcomes and accelerating discovery through data. David Master AI Specialist Amazon Web Services (AWS) David Master is an AI Specialist at Amazon Web Services (AWS), where he helps organizations design and deploy scalable, cloud-based AI solutions. With a strong background in machine learning engineering and cloud infrastructure, he collaborates across sectors to drive innovation and responsible AI adoption. David is a technology enthusiast and advocate helping nonprofit organizations harness data to apply artificial intelligence to their missions and the societal good they advance. His work spans AI model development, optimization, and workflow design with a focus on trust, fairness, and transparency to enable organizations to unlock value through intelligent systems. Fernando Vieira, MD Chief Executive Officer & CSO ALS Therapy Development Institute Fernando Vieira is CEO and Chief Scientific Officer of the ALS Therapy Development Institute (ALS TDI), a nonprofit biotech focused on ALS treatments. Trained as a physician-scientist at Harvard Medical School and with a background in Biological Engineering from the University of Florida, Dr. Vieira has worked in ALS research since 2001. He leads efforts in preclinical drug discovery, biomarker development, and ALS model optimization. Under his leadership, ALS TDI has advanced multiple therapies into clinical trials and pioneered new ALS drug development approaches. Brendan O’Leary Digital Health & Medical Technology Former Deputy Director & Acting Director, FDA Digital Health Center of Excellence Regulation and policy advisor Brendan O’Leary advises technology developers, healthcare organizations, and professional groups on digital health and medical technology development, evaluation, and regulation. He spent 14 years at the FDA, including as founding Deputy Director of the Digital Health Center of Excellence. Brendan helped shape key FDA policies and decisions on medical devices and digital health. He has represented the agency in public forums, congressional hearings, and media, and played a major role in the federal response to SARS-CoV-2. Ajay Verma, MD, Ph.D General Partner Formation Venture Engineering Ajay Verma is a neuroscientist, neurologist, and military and biotech veteran. He practiced neurology at Walter Reed Army Medical Center for 15 years before a 20-year biopharma career with executive roles at Merck, Novartis, Biogen, United Neuroscience, Codiak, and Yumanity. Ajay has worked across various drug and biotech platforms and is now a General Partner at Formation Venture Engineering and CEO of the immunotherapy startup Twilight Bioscience in Massachusetts. Sabrina Paganoni, MD, Ph.D Co‑Director, Neurological Clinical Research Institute (NCRI) Massachusetts General Hospital Sabrina Paganoni is Co-Director of the Neurological Clinical Research Institute at Massachusetts General Hospital and Assistant Professor at Harvard Medical School. A physician-scientist at the Healey & AMG Center for ALS, she leads ALS clinical trials, co-leads the HEALEY ALS platform trial, and co-chairs the global PHOENIX trial. Her work focuses on innovative trial designs, digital tools, and assistive tech for ALS and related disorders. With over 100 publications, she serves on editorial boards and holds three board certifications. Marianne Chase Senior Director, Clinical Trial Operations Neurological Clinical Research Institute Massachusetts General Hospital Marianne Chase is Senior Director of Clinical Trial Operations at the Neurological Clinical Research Institute and Healey Center for ALS at MGH. She helped launch the first ALS Platform Trial in 2020 and has over 25 years of experience leading NIH, foundation, and industry-sponsored research in trial design, coordination, and regulatory compliance. Marianne supports NeuroNEXT, NEALS, and the Parkinson’s Study Group, serves on the Clinical Trial Transformation Initiative, and teaches clinical trial best practices as adjunct faculty for the NINDS Clinical Trials Methodology Course. Karl A. Sillay, MD Assistant Professor of Neurological Surgery; Director of Adult Functional Stereotactic Neurosurgery Karl Sillay is an Assistant Professor of Neurological Surgery and Director of Adult Functional and Stereotactic Neurosurgery. He earned his medical degree from the Medical College of Georgia, completed his neurosurgery residency at Vanderbilt University, and pursued a fellowship in functional neurosurgery at the University of California San Francisco. With a career that spans positions in Colorado, Tennessee, and Wisconsin, Dr. Sillay specializes in treating movement disorders and complex spinal and cranial conditions. He is board-certified in neurological surgery and is committed to advancing precision surgical techniques and mentoring the next generation of neurosurgeons. John Furey Clinical Research Coordinator Lewis Katz School of Medicine Temple University John Furey is Clinical Research Coordinator at Temple University’s Lewis Katz School of Medicine, working with the MDA/ALS Center of Hope. A biomedical engineering graduate from Drexel University, he started as a co-op supporting ALS research and now leads coordination of clinical studies including a tissue biorepository, ALS natural history investigations, and biomarker tracking in patients treated with Radicava. John mentors Drexel co-op students and is dedicated to advancing ALS care through research and patient engagement. Philip Reilly, MD, JD Co‑Founder & Director, Luna Genetics Venture Partner, Third Rock Ventures EverythingALS Boardmember Philip Reilly is a biotech entrepreneur, physician, and attorney, co-founder and director of Luna Genetics, which develops next-gen prenatal diagnostic technologies. He is also a Venture Partner at Third Rock Ventures, helping launch innovative life science companies. Trained in internal medicine and clinical genetics, Dr. Reilly has held leadership roles including interim CMO at bluebird bio and CEO of Interleukin Genetics. He has authored seven books and over 100 scientific and policy articles, working at the crossroads of genetics, medicine, ethics, and law. Susan Catalano, Ph.D Chief Scientific Officer, Biotechnology Industry Leader EverythingALS Boardmember Susan Catalano is a biotechnology executive and Chief Scientific Officer who advises early-stage biotech ventures. She co-founded Cognition Therapeutics in 2007, leading efforts that developed CT1812, now in clinical trials. With over 20 years in neurobiology and oncology drug discovery, she has held executive roles at CodA Biotherapeutics, Acumen Pharmaceuticals, Rigel Pharmaceuticals, and Roche. Dr. Catalano has authored many publications and patents, led NIH-funded projects, and serves on scientific advisory boards for neurodegenerative drug development. EverythingALS Team John Hudacek Retired U.S. Army veteran Person living with ALS EverythingALS Pathfinder John Hudacek, a retired U.S. Army veteran from Melbourne, Florida, served 20 years in roles including Infantryman, Aerial Photographer, and Special Forces Medic. He later led training at a military boarding school and worked as an Army advisor and recruiter until 2020. Following a COVID-19 infection that year, he was diagnosed with ALS, with symptoms since 2019. He began FDA-approved treatments and maintains an ALSFRS-R score of 44. He follows a healthy lifestyle with daily exercise, therapy, and VA care. Steve Kowalski Retired Apple Computers Person Living with ALS Steve Kowalski from Boston, MA, retired from Apple in 2020 after 34 years. Diagnosed with ALS in 2017, he has raised over $250K for research, joined clinical trials, and serves on ALS boards. He uses mobility aids but stays active and advises on ALS technology. Anchor 4 McFinn Lovere ALS Reversal #42 Community Lead and Spiritual Guide Head of Pathfinder Program EverythingALS McFinn Lovere, diagnosed with ALS in 2006 and initially paralyzed, reversed his progression through spiritual practice and care. He is ALS Reversal #42 confirmed by Dr. Richard Bedlack. McFinn now leads the Pathfinder Program at EverythingALS and mentors others while participating in ALS research at Duke and other institutes. Indu Navar, MSCS Board Member, Global Genes Ph.D. Candidate, King’s College London EverythingALS Indu Navar is a Silicon Valley tech entrepreneur and CEO of the Peter Cohen Foundation (EverythingALS.org and EverythingAD.org), focused on tech-driven research for neurological diseases. After losing her husband to ALS in 2019, she dedicated herself to patient-led research and digital health. She serves on boards for Global Genes and Answer ALS. Indu has held leadership roles at Woodside Capital, Serus Corporation, WebMD, and NASA. She holds Bachelor's degrees in electrical engineering and Master's in computer science and currently pursuing a Ph.D in Neuroscience at King's college, London. Christian Rubio, MBA Executive Director & Head of Development EverythingALS Christian Rubio is Executive Director and Head of Development at EverythingALS, with 15+ years in patient advocacy, partnerships, and fundraising. He previously led advocacy at Praxis Precision Medicines and strategic advancement at Global Genes. An MBA graduate from Babson College, he drives initiatives in digital biomarkers, clinical trial participation, and collaboration in ALS and neurodegenerative research. Stephanie Henze Head of Design, Clinical Research Innovation & Strategy EverythingALS Stephanie Henze leads Design, Clinical Study, Research, Innovation, and Strategy at EverythingALS, with 30+ years in developing groundbreaking medical products and experiences. Combining medicine and industrial design, she applies user-centered design to advance digital biomarkers and patient engagement. She has held leadership roles at McKinsey & Company, LUNAR, and Hiemstra Product Development, and is a graduate of Art Center College of Design. Natalia Luchkina, Ph.D Research & Innovation Lead EverythingALS Natalia Luchkina leads digital health research and innovation strategy at EverythingALS, focusing on ALS and neurodegenerative diseases. She has 15+ years in healthcare and life sciences, including consulting at McKinsey and research at Harvard Medical School and McLean Hospital. Holding a Ph.D. in Physiology and Neuroscience from the University of Helsinki, she specializes in strategy, data-driven solutions, and organizational transformation. Silviya Bastola Research and Operations EverythingALS Silviya Bastola has over four years’ experience managing Phase II–IV clinical studies in biotech, pharma, and medical devices, focusing on infectious disease, vaccines, rare diseases, and neurology. At EverythingALS, she advances patient-centered innovation through digital health tools, research design, and app development, supporting the care-to-cure mission for ALS. She combines expertise in neuroscience, project management, and clinical operations to improve outcomes and accessibility. Swapnil Harkanth Head of Software Development EverythingALS Swapnil Harkanth is the Head of Software Development at EverythingALS, bringing extensive expertise in cloud computing, software engineering, data analytics, and cybersecurity. Passionate about innovation, Swapnil designs and implements scalable, high-performance solutions that support digital biomarker platforms and patient-centered technologies. With a strong focus on reliability, integration, and system optimization, Swapnil leads cross-functional teams through complex technical transformations. Known for delivering measurable impact, Swapnil enables organizations to harness technology to accelerate research, streamline operations, and maintain a competitive edge in a rapidly evolving digital landscape. Anusha Rao AI Research Engineer Neuroscience & Digital Biomarkers Student Ambassador Anusha Rao, AI Research Engineer at Arkifi and neuroscience researcher, specializes in digital biomarkers for neurodegenerative diseases. With prior work at the NIH and Johns Hopkins School of Medicine, she developed machine learning models for traumatic brain injury therapies and used AlphaFold to study protein structures tied to ALS. She also contributed to the ALS Generative AI initiative at EverythingALS, merging expertise in large language models, cognitive science, and computational neuroscience to advance early detection and treatment strategies for neurological disorders. Julian Peller, MSc Head of Data Science Digital Biomarker Research Lead Kaggle Code Grandmaster EverythingALS Julian Peller leads the EverythingALS Data Science team, advancing digital biomarkers for early ALS diagnosis and progression tracking. With 15+ years in software, an MSc in Computer Science, and recognition as a Kaggle Code Grandmaster, he applies deep learning and statistical methods to multimodal data to drive innovation in digital health. Alan Taitz, Ph.D Research Scientist, AI for Speech, Health & Biosensing SRI International EverythingALS Advisor Alan Taitz, an advanced computer scientist at SRI International, has 10+ years’ experience in statistical modeling and machine learning, with expertise in physics, neuroscience, speech, and AI. At EverythingALS, he advises on digital biomarker development for clinical trials, partnering with pharma and contributing to an FDA COA Letter of Intent. Holding three pending patents and a PhD on brain language processing, he is also passionate about teaching physics and machine learning. Marcos Trevisan, Ph.D Collaborative Investigator University of Buenos Aires & CONICET EverythingALS Marcos Trevisan is a collaborative investigator at EverythingALS and the University of Buenos Aires/CONICET, focusing on digital biomarkers, speech analysis, and neurodegenerative diseases. He develops AI models to monitor ALS progression via remote assessments like home spirometry and acoustic analysis. His work includes attention-based models to measure speech impairment, enhancing clinical endpoints. Dr. Trevisan combines computational modeling, neuroscience, and translational research to advance ALS care and digital health. Diego Shalom, Ph.D Research Scientist University of Buenos Aires & CONICET EverythingALS Diego Shalom is a Data and Research Scientist at EverythingALS and the University of Buenos Aires/CONICET, specializing in machine learning for health and neuroscience. He develops digital biomarkers for ALS, analyzing speech and respiratory data for early detection and tracking. His work includes listener effort modeling, home spirometry, and disease progression prediction. With a background in physics and computational modeling, Diego creates scalable tools to improve clinical assessment and neurodegenerative research. Anchor 5

EverythingALS Community achived extraordinary impact in 2022 We couldn't have done this without our partnerships, research and team! 🤍 Wishing you and your family a happy 2023 filled with hope, health, and happiness. We’re not just busy, our work together is impacting the progress in ALS – with more than 5,000 ALS families in our community, 200,000+ people access information on social media across the globe and 1,300+ participants in the research studies. 2022 was another great year for our amazing EverythingALS community. All of this is only possible because of your support and dedication to our mission to advance the use of digital technologies to accelerate ALS drug discoveries, redefine healthcare and improve the lives of people with ALS. Whether you attended EverythingALS Talk , participated in the research , attended the roundtable , or engaged in any other way, you contributed to #EverythingALS success. Together, we make it possible for 2023 to be the best year yet in our mission to advance the field of digital medicine and improve the lives of people with ALS. Thank you for all that you do. Indu Navar, Founder & CEO

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. Currently not enrolling ALS Radcliff Study : Multi-disciplinary focus

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. The ALS Gene Carrier Study Asymptomatic person with a known ALS Gene We are looking for individuals who are Gene Carriers of ALS and Asymtomatic - not diagnosed with ALS We are enrolling for a study motivated by the need for monitoring and early detection of motor and speech changes using advanced computational technology . By participating in this study, you will contribute to further improve current assessment of individuals with the Asymptomatic ALS gene using physiological signals and objective measurements. This study is entirely remote, allowing you to participate from the comfort of your home at a time that suits you. Our goal is to sensitively detect early motor and speech changes in ALS using a multimodal monitoring approach. We will measure gait and balance, speech, and upper limb function using sensors. This study is conducted in partnership with Massachusetts General Hospital and Harvard Medical School with a generous support from ALS Finding a Cure . Your connection to ALS I am interested to participate in * Required The Speech Study to advance drug trials The ALS Gene Carrier Study More Info click here Are you enrolled in PREVENT ALS Study (DIALS) or ALS Families Study? Yes No Don't Know Do you use Assistive Devices ? For Walking For Breathing CPAP Other Cane Rollator Walker Wheelchair Other Women Men What is your t-shirt size? Country Submit

Dont' miss an event, watch the past ALS Talk series from worls renowned ALS Experts Subscribe to Youtube channel Videos All Categories Play Video Play Video 01:03:26 Healey ALS MyMatch: Overview & Update Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Suma Babu, Co-Director, Neurological Research Institute, Massachusetts General Brigham and Associate Professor of Neurology, Harvard Medical School Dr Babu discussed: • Big picture: This talk introduced Healey ALS MyMatch, a new approach to running faster, smarter early-phase ALS clinical trials by focusing on biology, biomarkers, and patient-centered design. • Why it matters: MyMatch aims to reduce trial delays, improve access, and increase the chances of identifying promising treatments by better matching people living with ALS to the right studies. • What’s happening now: The program has already launched its first trial and is building a growing pipeline of additional therapies, with more studies expected in the near future. • What participants should know: MyMatch is designed for people with ALS who meet specific eligibility criteria, while expanded access programs and other pathways remain important options for those who do not qualify. 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh 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 #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #HealeyMyMatch 🔔 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. Play Video Play Video 01:06:37 Palliative Care for ALS: What is it? How can it help? How to access it? Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Kara Bischoff, Associate Division Chief for Outpatient Palliative Care and the Medical and Director of the Outpatient Palliative Care Service at University of California, San Francisco (UCSF). Dr Bischoff discussed: • What palliative care truly is — and how it supports people living with ALS and their families • Common myths and misconceptions, including why palliative care is not the same as hospice • How a palliative care team works alongside an ALS care team to improve quality of life, communication, and decision-making 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh 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 #EverythingALS #ALSCommunity #palliativecare #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. Play Video Play Video 01:17:41 Updates on ALS Clinical Trials from Regeneron and VectorY Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Oren Levy, Medical Director, Early Clinical Development, Regeneron Pharmaceuticals and Dr. Olga Uspenskaya-Cadoz, Chief Medical Officer, VectorY Therapeutics. Drs Levy and Uspenskaya-Cadoz discussed: • Progress on a new siRNA therapy for SOD1-ALS, focused on slowing disease progression through precision targeting (Dr. Levy). • Vectory Therapeutics introduced VTX002, an innovative gene therapy aimed at TDP43, advancing global trials that could redefine ALS treatment. • Both speakers emphasized collaboration, biomarkers, and patient-driven innovation as key to accelerating breakthroughs in ALS research. 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh 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 #ALSBiobanking #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. Play Video Play Video 01:30:15 Signals from the Outer Limits - What I've Learned from Slow Progressors and ALS Reversals Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Richard Bedlack, Stewart, Hughes, and Wendt Distinguished Professor, Professor of Neurology at Duke University, Associate of the Duke Initiative for Science & Society, and Faculty Network Member of the Duke Institute for Brain Sciences. Dr. Bedlack dives into: • What ALS reversals teach us about potential recovery and resilience. • How studying these rare cases can reveal new insights for future treatments. • His unique, optimistic approach to research that challenges conventional thinking about ALS. 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh 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 #ALSBiobanking #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. Play Video Play Video 01:02:01 ALS BioBanking in the 21st Century Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Brent Harris, Professor in the Departments of Neurology and Pathology at Georgetown University. He shares critical insights into the future of ALS biobanking — how cutting-edge tissue collection and analysis are driving breakthroughs in ALS research and patient care. Dr. Harris dives into: How biobanking advances our understanding of ALS The power of brain and tissue donation in accelerating discovery Innovative research shaping next-generation ALS therapiesI 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh 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 #ALSBiobanking #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. Play Video Play Video 01:40:32 Genetics and ALS: What New Discoveries Mean for You and Your Family with Jennifer Roggenbuck MS, CGC For this Expert Talk, we were honored to host Jennifer Roggenbuck, MS, CGC, a licensed genetic counselor and associate professor at The Ohio State University. Jennifer broke down the genetics of ALS, including: * Recent discoveries shaping our understanding of the disease * The role and implications of genetic testing * Key differences between familial and sporadic ALS She also explored the progress being made in gene-targeted therapies and highlighted the vital role genetic counselors play in helping families navigate testing and results. This session also included personal stories from community members living with ALS, as well as discussions about ongoing research efforts and global initiatives advancing therapy development. 📢 If you find this video helpful, please like, share, and subscribe to support ALS awareness and research. Related links: Speech Study: https://www.everythingals.org/speechproject The ALS Gene Carrier Study: https://www.everythingals.org/asymptomatic-study 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 ► 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 Load More

All Posts Care Resources Treatments & Protocols Search madhavi35 Oct 14, 2021 3 min EverythingALS Launches “Stories and Innovation in ALS” Podcast PRESS RELEASE Hosts Lisa Pecoraro Deegan and McFinn Lovere Interview Top Researchers, Clinicians, Patients, and Caregivers for an Inside... 135 views 0 comments Post not marked as liked indunavar Mar 29, 2021 2 min EverythingALS Selected to Present at the American Academy of Neurology Annual Meeting, April 17-22 April 16, 2021 (Los Altos, CA) – EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science... 278 views 0 comments Post not marked as liked

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