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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

Austen Speech Study EverythingALS is building an active, growing citizen research participants to draw from the community of over 7,000 People with ALS and Caregivers who collaborate directly with leading minds at eminent research institutions, jointly executing IRB-approved studies with EverythingALS for digital biomarker research to detect subtypes of ALS progression, early diagnosis and for remote patient monitoring. Aims: Collect Data Create Objective Measures Creation of a robust, longitudinal data collection - DEI achieved Fostering engagement Data & Research Output: Cohort characteristics 1200 HOURS OF DATA 7000 SESSIONS 850 PARTICIPANTS Citizen Driven Rapid Recruitment EverythingALS implemented a grassroots effort to recruit participants from our patient support community. With a reach that expands to 7,000 email subscribers, over 300,000 YouTube viewers, and 5,000 total attendees to our weekly Fireside Chats and ALS Expert Talk Series presentations, our organic method of recruitment is built on the solid reputation EverythingALS.org has secured by gaining patient trust as a leader in the research field. The membership comprises people with ALS in different stages or diagnoses, their caregivers, and healthy research participants (controls). Broad Geographic Distribution In collaboration and consultation with people with lived experiences with ALS (pALS and cALS) and in collaboration with leading clinical research experts and clinicians treating people with ALS, EverythingALS was convinced that the gaps could be filled by taking the tests out of the clinic and taking them to the participants, in their own homes. This new methodology, rooted in remote monitoring, sensor-driven data capture, and human experience support, hopes to foster engagement and collaboration between pALS, caregivers, researchers, and drug companies through an open-innovation platform approach to further studies using other digital data capture modalities beyond speech. This allowed for pALS from all over the country to contribute to the Austen Study. Ethnic Inclusion Access and Equity Remote study engagement, driven by diverse content marketing and awareness-raising of the EverythingALS mission and Citizen-driven research, has consistently delivered greater participant diversity compared with natural history study demographics performed on-site. However, recruitment and participation among African Americans remain lower than desired to achieve representation targets among all major ethnicities. EverythingALS is committed to improving this representation through direct feedback and guidance from black and African American participants, as well as collaborating with key stakeholders in engaging African American potential participants.” Request access to the Open Data Submit

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Careers Join us to help everyone impacted by ALS participate in Citizen-Driven Research and benefit from Open Innovation. EverythingALS offers satisfying careers for people ready to bring their talent and skills to the fight of finding a cure for ALS. We also offer critically important volunteer opportunities that empower all kinds of people to share their unique gifts to help drive our mission forward Boston Area, Remote Community Engagement Manager Reporting to the Executive Director, we are seeking a Community Engagement Manager with excellent project management and digital communications skills to join our dynamic team. This role is crucial in driving our discovery and engagement with our.. Read More

Speaker Kit ALS Expert Talk Series. Dear Speaker, We are excited to host you at our upcoming ALS Expert Talk Series. Our community looks forward to hearing from you. Please feel free to Share the announcement to your social media network and tag us. We have shared our social media handles below. Palliative Care for ALS - What is it? How can it help? How to access it? November 12, 2025 (4PM PT | 7PM ET) 🔔 Register: everythingals.org/ events I am speaking at the next #ALSExpertTalks 🙌. Hope to see you there! #EndALS #EverythingALS #ALS Facebook X (Twitter) WhatsApp LinkedIn Pinterest Copy link Download

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

Pateint Impact Stories pALS Impact Stories Jan 2023 Montgomery County man with ALS part of study that aims to find root cause of disease "The problem with ALS, unlike many other diseases, is they can't find a biomarker. The biomarkers, what you can see, is affected by a treatment," he described. The former high school public speaking teacher from Montgomery County is one of the 10% with ALS to live more than 10 years. READ MORE Jan 2023 Getting Vocal: Valerie Geerer on Everything ALS research “A friend told me about it, and I was like, ‘Sure, I’ll do it if it will help.’” Once a week, Val connects with an EverythingALS avatar that walks her through several tasks, including saying different words, repeating different phrases, and counting as high as she can in a single breath. READ MORE Tommy Edward Culpepper,Jr., Bentonville man works to help diagnose ALS sooner. Jul 23, 2022 A Bentonville man is dedicating his life to advocating for people with ALS and trying to help diagnose the disease sooner. “I’m a movie connoisseur,” said Tommy Edward Culpepper, Jr. READ MORE Gwen’s story of ALS - These 2 Surprising Traits May Predict ALS, New Research Says. Jul. 20, 2022 How ALS researchers are using an intriguing tool to learn keys of this disease that has at times taken years to diagnose. Plus, one woman's story of why she agreed to participate in this ALS research ( sometimes called Lou Gherig’s disease). READ MORE Groundbreaking research involving artificial intelligence could diagnose ALS patients sooner. Aug 31, 2022 Five thousand people in the U.S. are diagnosed with a neurological disease called ALS every year. Medical experts say it typically takes an average of two years to diagnose, but new research will likely make that timetable a lot shorter. READ MORE Paul Miller, living with ALS for a decade participates in a new ALS research driven by patient-focused non-profit. Jul 28, 2022 New research is underway to better understand and treat ALS, a difficult disease to diagnose with no known cure. ALS patient Paul Miller of Scranton is one of the participants. The progressive neurodegenerative disease ALS affects as many as 30,000 Americans. READ MORE Patients giving voice to ALS research - Brian Andre has been living with ALS for six years. May 31, 2022 Back in 2014, millions of people poured icy water over their heads to spread ALS awareness and support research for the devastating neurodegenerative disease. Now tech developers want to hear your voices. READ MORE Austen Eadie -Friedmann, a Connecticut man is battling a fatal disease with ‘enormous courage’. May 30, 2022 Three years ago Austen Eadie-Friedmann, 38, had a dynamic career in the pharmaceutical/biotech field working for a Fortune 500 company and living in exciting places such as New York City, Boston and Europe, with his husband, William DeGregorio. READ MORE

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Listen to all the episodes on Spotify Subscribe to the Youtube channel Podcast Video Channel Name Play Video Play Video 00:23 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:32 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. 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Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:32 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:29 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:31 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Load More Episode #1: Misdiagnosed! With guest Richard Sperry In this episode, Our guest is Richard Sperry who was misdiagnosed with ALS. We will take you through Richard's long journey of getting diagnosed, how he got a new diagnosis of MMN, and what he has chosen to do with his knowledge from his experience. Episode #2: ALS and the Wild Wild West of Medicine with Neil Olson In this episode, Lisa and McFinn are joined by Neil Olson, whose father lost his battle to ALS in 2020. We will take you through Neil’s journey with his father, the treatments they tried, and what he has chosen to do with the knowledge from his experience. Neil also talks about his advocacy work and efforts with EverythingALS. Episode #3: A Wife's Journey with ALS In this episode, we are joined by Nadia Sethi, who lost her husband, Sundeep Sethi, to ALS in 2021. Nadia talks about Sundeep’s life with ALS and her role as caregiver. We will take you through Nadia’s journey with her husband, how she kept her spirits up, and her champions throughout this experience. Episode #4: In Honor of My Dad, Dan Diaz In this episode, Lisa and McFinn are joined by Sarah Diaz, who lost her father, Dan Diaz, to ALS in 2019. We will take you through Sarah’s journey with her father, what role she took on to help him, and how she honors him today. Sarah is currently studying to be a MD, PhD specializing in neurology. Episode #5: My Journey to CEO of EverythingALS In this episode, we are joined by the CEO and Founder of EverythingALS, Indu Navar. Indu is a Silicon Valley entrepreneur, investor, and an unstoppable force, who started EverythingALS after losing her husband, Peter Cohen, to ALS in 2019. We will take you through Indu’s journey with her husband, the treatments they tried, and her vision for changing the face of ALS. Episode #6: A Brothers Legacy, A Sister’s Love In this episode, we are joined by are joined by Deb Fabricatore, who has been an ALS advocate for many years after losing her younger brother, Johnny, to ALS. We will take you through Deb’s journey with her brother, how she helped him, and how she also kept her spirits up throughout his diagnosis. Deb also talks about how she got involved with EverythingALS and her contribution to our research project. Episode #7: From Tragedy to Triumph with Lisa Deegan In this episode, McFinn Lovere interviews Lisa Deegan, his co-host and team member at EverythingALS. Lisa lost her younger brother John Pecoraro to ALS in 2018. We will take you through Lisa’s journey with her brother, their challenges, and how she became an advocate for ALS. She talks about turning her tragedy into positive actions and now puts her energy into EverythingALS to help others. Episode #8: Why ALS is Unresolved with Murgesh Navar In this episode, Lisa and McFinn are joined by Murgesh Navar, who lost his brother-in-law, Peter Cohen, to ALS in 2019. Murgesh is a Silicon Valley entrepreneur, who is passionate about finding a cure for ALS after seeing his sister, Indu Navar, care for her husband and face the challenges of ALS. Episode #9: ALS Reversal #42 with McFinn Lovere In this episode, Lisa Deegan interviews her co-host McFinn Lovere, who experienced a rare ALS reversal. His case is documented and is studied as ALS reversal #42 at Duke University. We will take you through McFinn’s unique journey with ALS, how he recovered, and what his important role as an ALS advocate on the EverythingALS team means to him. McFinn shares details of his role dedicating his time to helping others throughout their ALS journey. Episode #10: Biomarkers Lead To Results with Dr. Aria Anvar In this episode, Lisa and McFinn are joined by Dr. Aria Anvar, who has been a practicing physician for more than 22+years. Dr. Anvar brings his expertise as Principal Investigator on the EverythingALS Digital Biomarker Voice research study. In this podcast, we will take you through our citizen-driven research to help develop biomarkers as well as commercialized tools for measuring clinical endpoints in ALS. The goal of this research is to expedite clinical trials and eliminate the need for placebos. Dr. Anvar shares his thoughts on changing the paradigm of the ALS condition. Episode #11: Dying Out Loud with Dave Warnock and Bevin Jett In this episode, Lisa and McFinn are joined by Dave Warnock, who was diagnosed with ALS in 2019 and his partner and caregiver, Bevin Jett. We will take you through Dave’s journey of getting a diagnosis and how he spends his limited energy living with ALS with Bevin by his side. Dave and Bevin open up about what they’ve learned and the important role as a caretaker that Bevin plays in Dave’s life. Dave and Bevin also share their advocacy work with EverythingALS, and the importance of connecting with others in this journey. Episode #12: Community and ALS with Shea Harden In this episode, Lisa and McFinn are joined by Shea Harden who is an amazing ALS advocate. We will take you through Shea’s journey with her younger brother, Graham, who just recently passed away from ALS. Shea was instrumental in helping her brother by fundraising, getting disability benefits, finding qualified medical care, and working through the tracheotomy process. Shea opens up about the importance of community, and how to not be afraid of asking for help. Episode #13: Fashionably Fighting ALS with Dr. Richard Bedlack In this episode, McFinn and Lisa are joined by a world renowned neurologist, Dr. Richard Bedlack, professor of neurology at Duke University and director of the Duke ALS Clinic. In his more than 23 years of experience, he has seen over 3,000 patients living with ALS. He is also well known for creating the Duke ALS Clinic in 2001. Episode #14: Stories and Innovation in ALS: Audio Visual Assessments for ALS with David Suendermann-Oeft In this episode, Lisa and McFinn are joined by David Suendermann-Oeft, founder and CEO of Modality.a.i. Modality.ai has developed a conversational software program that can be used remotely by anyone with a computing device that produces accurate metrics of facial and speech behaviors that are predictive of neurological diseases like ALS. Modality is paving the way for more efficient, effective, less costly clinical trials. Episode #15: Passion, Perseverance, and Advocacy with Austen Eadie-Friedmann In this episode, Lisa and McFinn are joined by Austen Eadie-Friedmann, who -- still only in his 30s -- got diagnosed with ALS in 2019. We will take you through his long journey to get diagnosed, his daily challenges, and how he feels the drug development paradigm needs to be changed. He also talks about treatments and the need for access to world-class healthcare for patients. Episode #16: Keep On Ticking with Maggie and Dr. Hira Ahluwalia In this episode, Lisa and McFinn are joined by Dr. Hira Ahluwalia and his wife, Maggie. Hira talks about his journey with ALS, how it took 3.5 years to get a diagnosis, and what he thinks might have contributed to getting this disease. Episode #17: My Dedication to ALS with Dr. Merit Cudkowicz. In this episode, Lisa and McFinn are joined by Dr. Merit Cudkowicz who has over 25+ years working in ALS. Dr. Cudkowicz is the Chief of the Massachusetts General Hospital Neurology Service, Director, Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and the Julieanne Dorn Professor of Neurology at Harvard Medical School in Boston. Episode #18: I can’t Look Away with Allison Bulat. In this episode, Lisa and McFinn are joined by Allison Bulat who lost her first husband, Jeff Pogmiller, to a fast progressing bulbar onset of ALS. We will take you through Allison’s journey along Jeff’s side as his primary caregiver and also her advocacy efforts and how she has not turned away from helping others with this devastating disease. Episode #19: Detoxification & Biochemical Resilience with Dr. Shade In this episode, Lisa and McFinn are joined by Dr. Christopher Shade, who is the CEO and Founder of Quicksilver Scientific. We will take you through what Dr. Shade and Quicksilver Scientific have created to help rid the body and mind of toxins that impair mind and body function. Dr. Shade will walk us through his solutions on restoring a balanced system to help you get rid of toxins and attain a state of wellbeing. Episode #20: ALS has not Defined Us with Lori and Brian Andre. In this episode, Lisa and McFinn are joined by Lori and Brian Andre. Brian has slow progressing ALS, he was diagnosed in 2016 after 2 years of symptoms. They have been married for 40 years and are huge assets to the ALS community, working on community outreach and education for clinical trials with I AM ALS. Episode #21: Pursuit of Happiness with Mayuri and Mayank Saxena In this episode, Lisa and McFinn are joined by Mayuri and Mayank Saxena. Mayuri was diagnosed with ALS 2.5 years after the onset of symptoms, at the young age of 32. Mayuri is joined by her brother Mayank, who has been instrumental throughout her journey even though they are bi-coastal. Episode #22: Nutrition Essentials for ALS In this episode, Lisa and McFinn are joined by Coco Newton, MPH, RD, CNS who is a Registered Dietitian & Certified Nutrition Specialist. Coco works with each individual, helping them to understand their unique circumstances, belief systems, personal/spiritual strengths and challenges. She will tailor a program that more realistically addresses your nutritional needs and expectations. Coco has a lot of passion in working with many people diagnosed with ALS over the years to help them with their nutritional needs. Episode #23: Not Going Quietly with Ady Barkan and Rachael King In this episode, Lisa and McFinn are joined by American healthcare activist and lawyer Ady Barkan. Ady was diagnosed with ALS shortly after the birth of his son Carl, at the young age of 32. He joins us with his wife Rachael King by his side. Rachael is the mother to their two young children, Carl and Willow. She is a professor at UCSB and manages to balance motherhood, working, and being the pillar of strength for their family. Episode #24: Her ALS Story In this episode, Lisa and McFinn are joined by guests Leah Stavenhagen, Sunny Brous and Macey Hoaglund, who all have something in common - they were diagnosed with ALS in their late 20’s. They part of Her ALS Story, which is a group of women all diagnosed with ALS before their 35th birthdays.

EverythingALS Publications Publications ENCALS LEPM Poster Machine Learning Model Predicts Listener Effort in ALS-related Dysarthria Esteban G. Roitberg, Marcos A. Trevisan, Julian Peller, Diego E. Shalom, Felipe Aguirre, Gastón Bujía, Alan Taitz, Donna Harris, Katie Seaver, Stacey Sullivan, Amy Wright, Jordan R. Green, Jason Osik, Ryan A. Shewcraft, Peng Jiang, Joel Schwartz, Ernest Fraenkel, James D. Berry, Indu Navar Bingham, Lyle W. Ostrow. Background Dysarthria is associated with decreased quality of life in people with ALS. Monitoring progressive changes in speech is challenging due to the complex impact of ALS on multiple speech subsystems. Quantitative measures of dysarthria could be useful as ALS clinical trial outcome measures, providing clinically meaningful insight into the progression of bulbar symptomatology. Listener Effort (LE) is a clinician rated feature, scored from 0-100, describing how much effort a healthy listener needs to exert to understand a dysarthric speaker. Listener Effort is inherently clinically meaningful, can be reliably rated by Speech-Language Pathologists (SLPs) listening to recorded speech samples, changes quantitatively over time in ALS, and is highly reproducible. READ MORE Listener effort measures clinically meaningful change of dysarthria in amyotrophic lateral sclerosis Indu Navar Bingham, Raquel Norel, Esteban G. Roitberg, Julián Peller, Marcos A. Trevisan, Carla Agurto, Michele Merler, Diego E. Shalom, Felipe Aguirre, Iair Embon, Alan Taitz, Donna Harris, Amy Wright, Katie Seaver, Stacey Sullivan, Jordan R. Green, Lyle W. Ostrow, Ernest Fraenkel, James D. Berry Abstract Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that can cause progressive bulbar dysfunction and dysarthria, resulting in reduced quality of life. Quantitative motor speech analysis can identify features of dysarthria that worsen with ALS progression but are not, inherently, clinically meaningful. Listener effort is a clinician rated feature describing how much effort the listener needs to exert to understand the dysarthric speaker. This study investigated whether listener effort could act as a clinically meaningful measure of ALS dysarthria that could be used as an outcome measure in clinical trials. READ MORE Reliable monitoring of respiratory function with home spirometry in people living with amyotrophic lateral sclerosis Julian Peller, Marcos A. Trevisan, Gaston Bujial, Felipe Aguirrel, Diego E. Shalom, Alan TaitzIt, Stephanie Henzel, Silviya Bastola, Jason Osik, Ryan A. Shewcraft, Peng Jiang, Joel Schwartz, Terry Heiman-Patterson, Michael E. ShermanS, Matthew F. Wipperman, Oren Levy, Guofa Shou, Karl A. Sillay, Lyle W. Ostrow, Ernest Frankel, James D. Berry, Indu Navar Bingham, Esteban G. Roitberg Introduction Monitoring respiratory function is essential for assessing the progression of Amyotrophic Lateral Sclerosis (ALS) and planning interventions. Remote pulmonary function testing offers a promising alternative to in-clinic visits by reducing participant burden and enabling more frequent and accessible measurements. Methods: To evaluate the feasibility and reliability of home-based spirometry in ALS, we built on the Radcliff Study, a fully remote, longitudinal, exploratory study conducted at home by 67 people with ALS (pALS). After an initial training period, participants managed their coaching autonomously, performing spirometry independently or requesting assistance from trained personnel. READ MORE Clinical assessment and interpretation of dysarthria in ALS using attention based deep learning AI models Michele Merler, Carla Agurto, Julian Peller, Esteban Roitberg, Alan Taitz, Marcos A. Trevisan, Indu Navar, James D. Berry, Ernest Fraenkel, Lyle W. Ostrow, Guillermo A. Cecchi and Raquel Norel Abstract Speech dysarthria is a key symptom of neurological conditions like ALS, yet existing AI models designed to analyze it from audio signal rely on handcrafted features with limited inference performance. Deep learning approaches improve accuracy but lack interpretability. We propose an attention-based deep learning AI model to assess dysarthria severity based on listener effort ratings. Using 2,102 recordings from 125 participants, rated by three speech-language pathologists on a 100-point scale, we trained models directly from recordings collected remotely. Our best model achieved R2 of 0.92 and RMSE of 6.78. Attention-based interpretability identified key phonemes, such as vowel sounds influenced by ‘r’ (e.g., “car,” “more”), and isolated inspiration sounds as markers of speech deterioration. This model enhances precision in dysarthria assessment while maintaining clinical interpretability. By improving sensitivity to subtle speech changes, it offers a valuable tool for research and patient care in ALS and other neurological disorders. READ MORE 2024 NEALS Conference A Novel, Self-Administered, App-Based Assessment of Motor Movement in ALS Christina Fournier (Emory University), Indu Navar (EverythingALS), Natalia Luchkina (EverythingALS), Christian Rubio (EverythingALS), and Stephanie Henze (EverythingALS) Abstract This study presents the ALS Motor App, a self-administered, AI-supported tool designed to remotely assess motor movement in individuals with ALS. The app evaluates 46 motor tasks across bulbar, upper extremity, trunk, and lower extremity regions through written descriptions and animated visuals. Users record their ability to perform tasks, with results stored in a central repository for review. Initial beta testing has refined the app using feedback from clinicians and people with ALS (pALS), with the tool now available on Google Play and the Apple Store. The app offers enhanced data granularity and accessibility, supporting adaptive algorithms that track motor decline and predict future care needs. Future work will validate the tool against standardized ALS measures and explore its reliability and predictive power for clinically relevant milestones. READ MORE medRxiv Listener effort quantifies clinically meaningful progression of dysarthria in people living with amyotrophic lateral sclerosis Indu Navar Bingham, Raquel Norel, Esteban G. Roitberg, Julián Peller, Marcos A Trevisan, Carla Agurto, Diego E. Shalom, Felipe Aguirre, Iair Embon, Alan Taitz, Donna Harris, Amy Wright, Katie Seaver, Stacey Sullivan, Jordan R. Green, Lyle W. Ostrow, Ernest Fraenkel, James D. Berry Abstract Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that causes progressive muscle weakness. Progressive bulbar dysfunction causes dysarthria and thus social isolation, reducing quality of life. The Everything ALS Speech Study obtained longitudinal clinical information and speech recordings from 292 participants. In a subset of 120 participants, we measured speaking rate (SR) and listener effort (LE), a measure of dysarthria severity rated by speech pathologists from recordings. LE intra- and inter-rater reliability was very high (ICC 0.88 to 0.92). LE correlated with other measures of dysarthria at baseline. LE changed over time in participants with ALS (slope 0.77 pts/month; p<0.001) but not controls (slope 0.005 pts/month; p=0.807). The slope of LE progression was similar in all participants with ALS who had bulbar dysfunction at baseline, regardless of ALS site of onset. LE could be a remotely collected clinically meaningful clinical outcome assessment for ALS clinical trials. READ MORE 2024 NEALS Conference Machine Learning Model Predicts Listener Effort in ALS-related Dysarthria Indu Navar (EverythingALS), Esteban G. Roitberg (Universidad Nacional de San Martín and EverythingALS), Julian Peller (Humai and EverythingALS), Marcos A. Trevisan (Universidad de Buenos Aires and CONICET), Diego E. Shalom (Universidad de Buenos Aires and CONICET), Felipe Aguirre (EverythingALS), Gastón Bujía (EverythingALS), Iair Embon (EverythingALS), Alan Taitz (SRI International), Raquel Norel (IBM Research), Carla Agurto (IBM Research), Donna Harris (Temple University), Amy Wright (EverythingALS), Katie Seaver (EverythingALS), Stacey Sullivan (EverythingALS), Jordan R. Green (MGH Institute of Health Professions), Lyle W. Ostrow (Temple University), Ernest Fraenkel (MIT), and James D. Berry (Massachusetts General Hospital and Harvard Medical School) Abstract This study applies machine learning (ML) to predict Listener Effort (LE), a key measure of speech impairment in ALS-related dysarthria. Using 2,124 speech recordings from 125 participants (105 pALS, 20 controls) and manual LE ratings by Speech-Language Pathologists (SLPs) with excellent inter-rater reliability, ML models demonstrated robust predictive capabilities. A simple Lasso regression model achieved an R² of 0.83, with Speaking Rate and Whisper Confidence identified as the two most significant features. Advanced ensemble models achieved even higher accuracy (R² of 0.94). These findings highlight the potential of ML in quantifying LE, offering scalable and reliable tools to track ALS progression and evaluate therapeutic interventions. READ MORE 2024 MND Conference A Novel Web App-Based Assessment of Cognition in ALS Using Speech Indu Navar (EverythingALS), Raquel Norel (IBM), Carla Agurto (IBM), Guillermo A. Cecchi (IBM), Bo Wen (IBM), Natalia Luchkina (EverythingALS), Stephanie Henze (EverythingALS), Alan Taitz (EverythingALS), Ahmad Al Khleifat (King’s College London), James Berry (MGH), Sharon Abrahams (University of Edinburgh), and Ammar Al-Chalabi (King’s College London) Abstract This study introduces a web app-based assessment for evaluating cognition in individuals with ALS, inspired by the Edinburgh Cognitive and Behavioral ALS Screen (ECAS). Data from 108 participants, including people with ALS and controls, were analyzed, with a subset completing repeated evaluations. Speech samples collected through picture description tasks were processed using Whisper Open AI for transcription, extracting acoustic and linguistic features. Linear regression models achieved Spearman correlations between 0.32 and 0.51 for predicting cognitive scores. The results highlight the potential of digitized, speech-based cognitive assessments as scalable, accessible alternatives to traditional methods, especially for individuals in remote or underserved areas. Future work will expand cohort size and refine methodologies to enhance accuracy and generalizability. READ MORE 2024 A Roadmap to Incorporating Digital Endpoints in Clinical Trials 2024-2025 Authors and Contributors EverythingALS Industry Consortia members, EverythingALS Scientific Advisory Board, regulatory advisors, and members of the ALS community, including pALS (people with ALS) and cALS (caregivers of people with ALS). The collaborative effort included input from biopharmaceutical professionals, clinicians, technology developers, and advocacy representatives. The acknowledgment section specifically highlights the ALS community's vital role in shaping the research and insights presented. Objective This white paper advocates for the integration of digital health technologies (DHTs) into ALS clinical trials to enhance efficiency, accessibility, and patient-centricity. Traditional endpoints in ALS trials are burdensome and often lead to high attrition and prolonged durations. By leveraging DHTs, trials can enable continuous, remote, and quantitative patient monitoring, thus reducing bias, improving retention, and broadening accessibility. The roadmap outlined emphasizes interdisciplinary collaboration, agile methodologies, and regulatory alignment to optimize the clinical trial experience for both pALS and cALS. These efforts aim to accelerate innovation, improve disease tracking, and foster a participant-centered research paradigm for ALS care and therapeutics. READ MORE 2024 Harnessing Remote Speech Tasks for Early ALS Biomarker Identification Carla Agurto (IBM), Michele Merler (IBM), Esteban G. Roitberg (EverythingALS), Alan Taitz (formerly EverythingALS, now at SRI International), Marcos A. Trevisan (Universidad de Buenos Aires, CONICET), Diego E. Shalom (Universidad de Buenos Aires, CONICET), Julian Peller (EverythingALS), Lyle W. Ostrow (Temple University), Indu Navar (EverythingALS), Ernest Fraenkel (MIT), James Berry (MGH), Guillermo A. Cecchi (IBM), and Raquel Norel (IBM) Abstract This study investigates acoustic biomarkers for the early detection and monitoring of Amyotrophic Lateral Sclerosis (ALS). Using a dataset of 6,276 speech sessions from 291 participants, including 135 pALS, acoustic features were extracted via OpenSMILE and analyzed with machine learning classifiers. Results show up to 90% AUC in distinguishing ALS stages and 66% AUC for early detection. These findings highlight the potential of speech tasks as biomarkers to improve early diagnosis, track progression, and enhance the understanding of ALS READ MORE ISPOR 2023 Real-World Treatment Preferences Among People Living with ALS: A Discrete Choice Experiment Biogen, Cambridge, MA Trinity Life Sciences, Waltham, MA NEALS Consortium, MA, IBM Research, Yorktown Heights, NY EverythingALS, Seattle, WA Objective Quantitatively assess which treatment attributes are most important to people living with amyotrophic lateral sclerosis (ALS; pALS) in the United States (US) when making treatment decisions. Through direct and indirect assessment of preference, pALS indicated a desire for efficacious treatment options that improve physical functioning and survival. READ MORE 2023 IEEE International Conference on Digital Health (ICDH) Remote Inference of Cognitive Scores in ALS Patients Using a Picture Description Carla Agurto (IBM), Guillermo Cecchi (IBM), Bo Wen (IBM), Ernest Fraenkel (MIT), James Berry (MGH), Indu Navar (EverythingALS) and Raquel Norel (IBM) Abstract In this paper, we focused on another important aspect, cognitive impairment, which affects 35-50% of the ALS population. In an effort to reach the ALS population, which frequently exhibits mobility limitations, we implemented the digital version of the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) test for the first time. READ MORE October 2023 Muscle and Nerve Identifying amyotrophic lateral sclerosis through interactions with an internet search engine Elad Yom-Tov (Microsoft Research) , Indu Navar (EverythingALS), Ernest Fraenkel (MIT) , James D. Berry (MGH) Microsoft Research, Israel EverythingALS, Seattle, WA MIT, Cambridge, MA, MGH, Harvard, MA Abstract We identified 285 anonymous Bing users whose queries indicated that they had been diagnosed with ALS and matched them to 1) 3276 control users and 2) 1814 users whose searches indicated they had ALS disease mimics. We tested whether the ALS group could be distinguished from controls and disease mimics based on search engine query data. Finally, we conducted a prospective validation from participants who provided access to their Bing search data. The model distinguished between the ALS group and controls with an area under the curve (AUC) of 0.81. READ MORE AMIA 2022 Annual Symposium ALS Community Pressing Issues: Lessons from a Survey A. Anvar (EverythingALS), J. Berry (MGH) , E. Fraenkel (MIT), I. Navar (EverythingALS), G. A. Cecchi (IBM), R. Norel (IBM) EverythingALS, Seattle, WA MGH, Cambridge, MA MIT, Harvard, Cambridge, MA IBM Thomas J. Watson Research Center, Yorktown Heights, NY Abstract We gathered survey data to identify the unmet needs expressed by Amyotrophic Lateral Sclerosis (ALS) patients, caregivers, and advocates. Natural Language Processing was used to summarize free text data. Identified needs, named anchor topics were selected manually from the data. Text embedding was used to score participant answers to anchor topics. Despite a broad range of opinions among cohorts, we detected pain control, better access to information and ALSFRS-R alternatives as important ALS community issues. Natural Language Processing (NLP) and Artificial Intelligence (AI) was used to analyze the unstructured text data to obtain a deeper understanding of respondents’ answers. READ MORE 2024 NEALS Conference A Novel, Self-Administered, App-Based Assessment of Motor Movement in ALS Christina Fournier (Emory University), Indu Navar (EverythingALS), Natalia Luchkina (EverythingALS), Christian Rubio (EverythingALS), and Stephanie Henze (EverythingALS) Abstract This study presents the ALS Motor App, a self-administered, AI-supported tool designed to remotely assess motor movement in individuals with ALS. The app evaluates 46 motor tasks across bulbar, upper extremity, trunk, and lower extremity regions through written descriptions and animated visuals. Users record their ability to perform tasks, with results stored in a central repository for review. Initial beta testing has refined the app using feedback from clinicians and people with ALS (pALS), with the tool now available on Google Play and the Apple Store. The app offers enhanced data granularity and accessibility, supporting adaptive algorithms that track motor decline and predict future care needs. Future work will validate the tool against standardized ALS measures and explore its reliability and predictive power for clinically relevant milestones. READ MORE medRxiv Listener effort quantifies clinically meaningful progression of dysarthria in people living with amyotrophic lateral sclerosis Indu Navar Bingham, Raquel Norel, Esteban G. Roitberg, Julián Peller, Marcos A Trevisan, Carla Agurto, Diego E. Shalom, Felipe Aguirre, Iair Embon, Alan Taitz, Donna Harris, Amy Wright, Katie Seaver, Stacey Sullivan, Jordan R. Green, Lyle W. Ostrow, Ernest Fraenkel, James D. Berry Abstract Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that causes progressive muscle weakness. Progressive bulbar dysfunction causes dysarthria and thus social isolation, reducing quality of life. The Everything ALS Speech Study obtained longitudinal clinical information and speech recordings from 292 participants. In a subset of 120 participants, we measured speaking rate (SR) and listener effort (LE), a measure of dysarthria severity rated by speech pathologists from recordings. LE intra- and inter-rater reliability was very high (ICC 0.88 to 0.92). LE correlated with other measures of dysarthria at baseline. LE changed over time in participants with ALS (slope 0.77 pts/month; p<0.001) but not controls (slope 0.005 pts/month; p=0.807). The slope of LE progression was similar in all participants with ALS who had bulbar dysfunction at baseline, regardless of ALS site of onset. LE could be a remotely collected clinically meaningful clinical outcome assessment for ALS clinical trials. READ MORE 2024 NEALS Conference Machine Learning Model Predicts Listener Effort in ALS-related Dysarthria Indu Navar (EverythingALS), Esteban G. Roitberg (Universidad Nacional de San Martín and EverythingALS), Julian Peller (Humai and EverythingALS), Marcos A. Trevisan (Universidad de Buenos Aires and CONICET), Diego E. Shalom (Universidad de Buenos Aires and CONICET), Felipe Aguirre (EverythingALS), Gastón Bujía (EverythingALS), Iair Embon (EverythingALS), Alan Taitz (SRI International), Raquel Norel (IBM Research), Carla Agurto (IBM Research), Donna Harris (Temple University), Amy Wright (EverythingALS), Katie Seaver (EverythingALS), Stacey Sullivan (EverythingALS), Jordan R. Green (MGH Institute of Health Professions), Lyle W. Ostrow (Temple University), Ernest Fraenkel (MIT), and James D. Berry (Massachusetts General Hospital and Harvard Medical School) Abstract This study applies machine learning (ML) to predict Listener Effort (LE), a key measure of speech impairment in ALS-related dysarthria. Using 2,124 speech recordings from 125 participants (105 pALS, 20 controls) and manual LE ratings by Speech-Language Pathologists (SLPs) with excellent inter-rater reliability, ML models demonstrated robust predictive capabilities. A simple Lasso regression model achieved an R² of 0.83, with Speaking Rate and Whisper Confidence identified as the two most significant features. Advanced ensemble models achieved even higher accuracy (R² of 0.94). These findings highlight the potential of ML in quantifying LE, offering scalable and reliable tools to track ALS progression and evaluate therapeutic interventions. READ MORE 2024 MND Conference A Novel Web App-Based Assessment of Cognition in ALS Using Speech Indu Navar (EverythingALS), Raquel Norel (IBM), Carla Agurto (IBM), Guillermo A. Cecchi (IBM), Bo Wen (IBM), Natalia Luchkina (EverythingALS), Stephanie Henze (EverythingALS), Alan Taitz (EverythingALS), Ahmad Al Khleifat (King’s College London), James Berry (MGH), Sharon Abrahams (University of Edinburgh), and Ammar Al-Chalabi (King’s College London) Abstract This study introduces a web app-based assessment for evaluating cognition in individuals with ALS, inspired by the Edinburgh Cognitive and Behavioral ALS Screen (ECAS). Data from 108 participants, including people with ALS and controls, were analyzed, with a subset completing repeated evaluations. Speech samples collected through picture description tasks were processed using Whisper Open AI for transcription, extracting acoustic and linguistic features. Linear regression models achieved Spearman correlations between 0.32 and 0.51 for predicting cognitive scores. The results highlight the potential of digitized, speech-based cognitive assessments as scalable, accessible alternatives to traditional methods, especially for individuals in remote or underserved areas. Future work will expand cohort size and refine methodologies to enhance accuracy and generalizability. READ MORE 2024 A Roadmap to Incorporating Digital Endpoints in Clinical Trials 2024-2025 Authors and Contributors EverythingALS Industry Consortia members, EverythingALS Scientific Advisory Board, regulatory advisors, and members of the ALS community, including pALS (people with ALS) and cALS (caregivers of people with ALS). The collaborative effort included input from biopharmaceutical professionals, clinicians, technology developers, and advocacy representatives. The acknowledgment section specifically highlights the ALS community's vital role in shaping the research and insights presented. Objective This white paper advocates for the integration of digital health technologies (DHTs) into ALS clinical trials to enhance efficiency, accessibility, and patient-centricity. Traditional endpoints in ALS trials are burdensome and often lead to high attrition and prolonged durations. By leveraging DHTs, trials can enable continuous, remote, and quantitative patient monitoring, thus reducing bias, improving retention, and broadening accessibility. The roadmap outlined emphasizes interdisciplinary collaboration, agile methodologies, and regulatory alignment to optimize the clinical trial experience for both pALS and cALS. These efforts aim to accelerate innovation, improve disease tracking, and foster a participant-centered research paradigm for ALS care and therapeutics. READ MORE 2024 Harnessing Remote Speech Tasks for Early ALS Biomarker Identification Carla Agurto (IBM), Michele Merler (IBM), Esteban G. Roitberg (EverythingALS), Alan Taitz (formerly EverythingALS, now at SRI International), Marcos A. Trevisan (Universidad de Buenos Aires, CONICET), Diego E. Shalom (Universidad de Buenos Aires, CONICET), Julian Peller (EverythingALS), Lyle W. Ostrow (Temple University), Indu Navar (EverythingALS), Ernest Fraenkel (MIT), James Berry (MGH), Guillermo A. Cecchi (IBM), and Raquel Norel (IBM) Abstract This study investigates acoustic biomarkers for the early detection and monitoring of Amyotrophic Lateral Sclerosis (ALS). Using a dataset of 6,276 speech sessions from 291 participants, including 135 pALS, acoustic features were extracted via OpenSMILE and analyzed with machine learning classifiers. Results show up to 90% AUC in distinguishing ALS stages and 66% AUC for early detection. These findings highlight the potential of speech tasks as biomarkers to improve early diagnosis, track progression, and enhance the understanding of ALS READ MORE ISPOR 2023 Real-World Treatment Preferences Among People Living with ALS: A Discrete Choice Experiment Biogen, Cambridge, MA Trinity Life Sciences, Waltham, MA NEALS Consortium, MA, IBM Research, Yorktown Heights, NY EverythingALS, Seattle, WA Objective Quantitatively assess which treatment attributes are most important to people living with amyotrophic lateral sclerosis (ALS; pALS) in the United States (US) when making treatment decisions. Through direct and indirect assessment of preference, pALS indicated a desire for efficacious treatment options that improve physical functioning and survival. READ MORE 2023 IEEE International Conference on Digital Health (ICDH) Remote Inference of Cognitive Scores in ALS Patients Using a Picture Description Carla Agurto (IBM), Guillermo Cecchi (IBM), Bo Wen (IBM), Ernest Fraenkel (MIT), James Berry (MGH), Indu Navar (EverythingALS) and Raquel Norel (IBM) Abstract In this paper, we focused on another important aspect, cognitive impairment, which affects 35-50% of the ALS population. In an effort to reach the ALS population, which frequently exhibits mobility limitations, we implemented the digital version of the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) test for the first time. READ MORE October 2023 Muscle and Nerve Identifying amyotrophic lateral sclerosis through interactions with an internet search engine Elad Yom-Tov (Microsoft Research) , Indu Navar (EverythingALS), Ernest Fraenkel (MIT) , James D. Berry (MGH) Microsoft Research, Israel EverythingALS, Seattle, WA MIT, Cambridge, MA, MGH, Harvard, MA Abstract We identified 285 anonymous Bing users whose queries indicated that they had been diagnosed with ALS and matched them to 1) 3276 control users and 2) 1814 users whose searches indicated they had ALS disease mimics. We tested whether the ALS group could be distinguished from controls and disease mimics based on search engine query data. Finally, we conducted a prospective validation from participants who provided access to their Bing search data. The model distinguished between the ALS group and controls with an area under the curve (AUC) of 0.81. READ MORE AMIA 2022 Annual Symposium ALS Community Pressing Issues: Lessons from a Survey A. Anvar (EverythingALS), J. Berry (MGH) , E. Fraenkel (MIT), I. Navar (EverythingALS), G. A. Cecchi (IBM), R. Norel (IBM) EverythingALS, Seattle, WA MGH, Cambridge, MA MIT, Harvard, Cambridge, MA IBM Thomas J. Watson Research Center, Yorktown Heights, NY Abstract We gathered survey data to identify the unmet needs expressed by Amyotrophic Lateral Sclerosis (ALS) patients, caregivers, and advocates. Natural Language Processing was used to summarize free text data. Identified needs, named anchor topics were selected manually from the data. Text embedding was used to score participant answers to anchor topics. Despite a broad range of opinions among cohorts, we detected pain control, better access to information and ALSFRS-R alternatives as important ALS community issues. Natural Language Processing (NLP) and Artificial Intelligence (AI) was used to analyze the unstructured text data to obtain a deeper understanding of respondents’ answers. READ MORE Multimodal dialog based speech and facial biomarkers capture differential disease progression rates for ALS remote patient monitoring, M. Neumann, O. Roesler, J. Liscombe, H. Kothare, D. Suendermann-Oeft, J. D. Berry, E. Fraenkel, R. Norel, A. Anvar, I. Navar, A. V. Sherman, J. R. Green and V. Ramanarayanan (2021). In Proc. of: The 32nd International Symposium on Amyotrophic Lateral Sclerosis and Motor Neuron Disease, Virtual, December 2021. Objective Identify audiovisual speech markers that are responsive to clinical progression of Amyotrophic Lateral Sclerosis (ALS). READ MORE Lessons learned from a large-scale audio-visual remote data collection for Amyotrophic Lateral Sclerosis research. Vikram Ramanarayanan, Michael Neumann , Aria Anvar, Oliver Roesler , Jackson Liscombe , Hardik Kothare , David Suendermann-Oeft , James D. Berry , Ernest Fraenkel , Raquel Norel , Alexander V. Sherman, Jordan R. Green and Indu Navar Modality.AI, MGH Institute of Health Professions, Massachusetts Institute of Technology, IBM Thomas J. Watson Research Center, EverythingALS, Peter Cohen Foundation, Harvard University, University of California, San Francisco READ MORE Investigating the Utility of Multimodal Conversational Technology and Audiovisual Analytic Measures for the Assessment and Monitoring of Amyotrophic Lateral Sclerosis at Scale. M. Neumann, O. Roesler, J. Liscombe, H. Kothare, D. Suendermann-Oeft, D. Pautler, I. Navar, A. Anvar, J. Kumm, R. Norel, E. Fraenkel, A. Sherman, J. Berry, G. Pattee, J. Wang, J. Green, V. Ramanarayanan: Investigating the Utility of Multimodal Conversational Technology and Audiovisual Analytic Measures for the Assessment and Monitoring of Amyotrophic Lateral Sclerosis at Scale . Accepted at Interspeech 2021, 22nd Annual Conference of the International Speech Communication Association, Brno, Czech Republic, August - September 2021 Accepted at Interspeech 2021, 22nd Annual Conference of the International Speech Communication Association, Brno, Czech Republic, August - September 2021. Abstract We investigate the utility of audiovisual dialog systems combined with speech and video analytics for real-time remote monitoring of depression at scale in uncontrolled environment settings. We collected audiovisual conversational data from participants who interacted with a cloud-based multimodal dialog system, and automatically extracted a large set of speech and vision metrics based on the rich existing literature of laboratory studies. We report on the efficacy of various audio and video metrics in differentiating people with mild, moderate and severe depression, and discuss the implications of these results for the deployment of such technologies in real-world neurological diagnosis and monitoring applications. READ MORE Towards A Large-Scale Audio-Visual Corpus for Research on Amyotrophic Lateral Sclerosis A. Anvar, D. Suendermann-Oeft, D. Pautler, V. Ramanarayanan, J. Kumm, J. Berry, R. Norel, E. Fraenkel, and I. Navar: Towards A Large-Scale Audio-Visual Corpus for Research on Amyotrophic Lateral Sclerosis. In Proc. of AAN 2021, 73th Annual Meeting of the American Academy of Neurology, Virtual, April 2021. In Proc. of AAN 2021, 73th Annual Meeting of the American Academy of Neurology, Virtual, April 2021 Objective This presentation describes the creation of a large, open data platform, comprising speech and video recordings of people with ALS and healthy volunteers. Each participant is interviewed by Modality.AI’s virtual agent, emulating the role of a neurologist or speech pathologist walking them through speaking exercises [Fig 1] The collected data is made available to the academic and research community to foster acceleration of the development of biomarkers, diagnostics, therapies, and fundamental scientific understanding of ALS. READ MORE

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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. Register below to join the event ALS Studies, Trials and Treatments with Dr. Suma Babu Dec 10, 2025 | 4PM PT, 7PM ET ALS Studies, Trials, and Treatments with Dr. Suma Babu Dec 10, 2025, 7:00 PM EST Register Now Dr. Suma Babu Co-Director, Neurological Research Institute, Massachusetts General Brigham Associate Professor of Neurology, Harvard Medical School Learn more about Events FUTURE EVENTS RSVP for Future Events PAST EVENTS View All Past Events