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Fund the CureC9 Program’s first approved project A program within EverythingALS, directed by a Scientific Advisory Board, built to materially alter C9orf72 disease Gifts to the CureC9 Program are tax-deductible. EverythingALS is a brand of Peter Cohen Foundation, a non-profit 501(c)(3): EIN 84-3055901. The CureC9 Program is a research program of EverythingALS. Project First Flagship: Optimizing CNS delivery for genetic therapies. The rate-limiting step for any genetic therapy aimed at the central nervous system is not the editing chemistry but the delivery. Solving delivery is the precondition for any C9orf72 (C9) gene therapy reaching patients safely, and a delivery system optimized in C9 will apply to every genetic and sporadic form of ALS and FTD, and to other neurodegenerative and neurodevelopmental diseases that share the same bottleneck. This is the SAB’s first approved project. Click here to learn more about the project. Technical Explanations Unlock gene therapy in the brain. Current Flagship Five-Year Roadmap to Solving the Delivery Problem in the Brain and Spinal Cord: Unlocking CRISPR for C9 ALS and FTD The CureC9 Program is a program within EverythingALS, a 501(c)(3) nonprofit. EverythingALS takes no overhead on CureC9 Program gifts. Every tax-deductible dollar flows through EverythingALS to the receiving academic institution, where we negotiate indirect costs below 10 percent — against a research-industry average closer to 60 percent. For a $1 million gift, this is the difference between roughly $400,000 and more than $900,000 reaching the bench. Simplified Explanation A five-year plan to deliver the first CRISPR gene therapy for C9orf72 ALS and FTD. The CRISPR therapy itself is already built. Funding goes entirely to solving the delivery problem — identifying the optimal vehicle to shuttle CRISPR to the brain and spinal cord. PC: Peter Cohen CureC9 Program Flagship Fund 100% of your generous donation will be applied to advance critical ALS & FTD research. Donation Type * One-time Monthly CureC9 Program Flagship Fund Select Donation Amount CureC9 Program Flagship Fund Make Another Donation Funds a meaningful block of the SAB-approved flagship. Donation Amount $ Is this donation in honor or memory of someone? * Yes No In honor / memory of For large donations, (over $25,000) please email speech@everythingals.org and info.curec9@gmail.com with subject line: "I want to give a substantial gift to the CureC9 Program" Donate Redirecting to Payment Screen.. Talk to us about a transformative gift Funding Model How the CureC9 Program moves donor dollars. EverythingALS is a 501(c)(3) of the Peter Cohen Foundation, so every donation is fully tax-deductible. EverythingALS takes no overhead from CureC9 Program gifts. At each funded institution we negotiate indirect cost rates below 10 percent, against a research-industry average closer to 60 percent. For a $1 million gift, this is the difference between roughly $400,000 and more than $900,000 reaching the bench. Tax Deductibility Legal entity: Peter Cohen Foundation, operating as EverythingALS EIN: 84-3055901 501(c)(3) charitable organization, tax-exempt since December 2019 Registered address: 1000 15th Ave E, Seattle, WA 98112-3912 The CureC9 Program is a research program of EverythingALS. All gifts are processed by the Peter Cohen Foundation for tax purposes. Scientific Advisory Board Cure C9 is guided by an international advisory board of leading experts in ALS, neurodegeneration, and therapeutic development. These scientists help identify the most promising research directions and ensure that funding is directed toward projects with the highest potential to change outcomes for patients. SAB members advise on scientific direction; some SAB members also lead funded projects through their own labs. Daniel Mordes (MD, PhD) Dr. Mordes is an Assistant Professor and board-certified neuropathologist at UCSF. His work connects C9 dipeptide repeat toxicity to changes in gene expression through SRSF7 and links TBK1 (another ALS-associated protein) to the C9ORF72 protein complex. His lab is building a “wiring diagram” of C9 disease, mapping the molecular nodes that are disrupted and how they converge on TDP-43 dysfunction. With collaborators in Boston, he has recently demonstrated a shared molecular pathology between ALS and advanced forms of chronic traumatic encephalopathy (CTE) in individuals with a history of playing contact sports. Together, these insights define how cellular systems fail in neurodegenerative disease and help turn “we know the gene” into actionable therapeutic targets. Renzo Mancuso (PhD) Dr. Mancuso is a group leader and Deputy Director at the VIB–Center for Molecular Neurology, Belgium. He obtained his PhD in Barcelona in 2014 and since then his primary focus has been to investigate the underlying molecular mechanisms that drive Alzheimer’s disease (AD) and Frontotemporal degeneration (FTD), with special focus on inflammatory networks and particularly the contribution of microglia. In his lab, research is performed using a wide range of techniques and technologies, including classical mouse models, iPSC and cutting-edge humanised mouse systems to determine the immune component of these disorders and determine how genetics alter microglial function and contribute to the initiation and perpetuation of brain disease. Dr. Mancuso has been awarded with several young investigator awards (including the Grand Prix by the French Alzheimer’s foundation, ARUK), for his seminal contributions to our understanding of microglial pathogenic mechanisms. He has also received several prestigious grants, including an ERC Starting Grant to investigate neuro-glia interactions in AD. Dr. Christopher Donnelly, (PhD) Dr. Donnelly, Ph.D., is an Associate Professor of Neurology at the Peter O’Donnell Jr. Brain Institute at UT Southwestern and Neuromuscular Section Chief. He earned his Ph.D. from the University of Delaware, where he studied axonal RNA transport and local translation in nerve regeneration with Dr. Jeff Twiss, and completed postdoctoral training with Dr. Jeff Rothstein at Johns Hopkins School of Medicine, investigating cellular dysfunction in C9orf72-associated ALS and FTD. Prior to joining UT Southwestern in 2026, he was the founding Scientific Director of the LiveLikeLou Center for ALS Research at the University of Pittsburgh School of Medicine. The Donnelly lab focuses on the molecular mechanisms underlying neurodegenerative disease, with an emphasis on how dysfunction of RNA-binding proteins, including TDP-43 and FUS, drives pathology and neuronal vulnerability in C9orf72 and sporadic ALS/FTLD. His laboratory investigates how RNA regulates protein function and phase behavior, and how defects in nuclear and axonal transport and pathogenic protein interactions drive ALS/FTLD. The goal of this work is to identify strategies to restore normal protein function in disease. The Donnelly lab integrates patient-derived neuronal models with RNA-based therapeutic approaches to target disease mechanisms. Dr. Donnelly’s prior research identified key disease pathways, including nucleocytoplasmic transport defects, and advanced therapeutic strategies targeting toxic C9orf72 gene products with antisense oligonucleotide (ASO) therapies. More recently, his lab developed short RNA oligonucleotides (bait/chaperone RNAs) approaches to reverse pathological protein aggregation and restore physiological function in ALS/FTLD. Steven Boeynaems, (PhD) Dr. Boeynaems is an Assistant Professor in Molecular and Human Genetics at Baylor College of Medicine, an Investigator at the Duncan Neurological Research Institute at Texas Children’s Hospital, and a Faculty Member of the Therapeutic Innovation Center, the Dan L Duncan Comprehensive Cancer Center, and the Center for Alzheimer’s and Neurodegenerative Diseases. He is a CPRIT Scholar in Cancer Research and an NIH Director’s New Innovator. Dr. Boeynaems has over a decade of expertise in the study of tandem repeats and protein aggregation in human disease and has contributed important insights into the pathophysiology of C9orf72 ALS/FTD. Dr. Zachary McEachin, (PhD) Dr. McEachin is an assistant professor in Human Genetics and Cell Biology at Emory University. His laboratory is focused on understanding the molecular mechanisms underlying neurodegenerative disease, particularly repeat expansion disorders such as C9orf72-ALS/FTD. His research integrates multiomic analyses with diverse experimental models to uncover how genetic and molecular alterations contribute to disease pathogenesis and to identify new therapeutic targets for neurodegeneration. Dr. Paymaan Jafar-Nejad (MD) Dr. Jafar-Nejad, MD, is a scientific leader in RNA therapeutics and currently serves as Executive Director at Ionis Pharmaceuticals, Inc., a pioneering biotechnology company in RNA-targeted drug discovery and development. He brings more than two decades of experience in neuroscience and RNA biology, including over a decade focused on oligonucleotide therapeutics, and has contributed to a substantial body of scientific publications in the field. Dr. Jafar-Nejad earned his medical degree from Tehran University of Medical Sciences and completed postdoctoral training in Dr. Huda Zoghbi’s laboratory at Baylor College of Medicine, where he investigated mechanisms of neurodegeneration. At Ionis, he has led research programs in neurology and rare diseases, advancing RNA-based therapies into clinical trials for ALS, Angelman syndrome, genetic epileptic encephalopathies, and related disorders. In recognition of this work, he and his colleagues received the 2023 Lalji & Family ALS Endowed Award for Innovative Healing from the Healey & AMG Center at Massachusetts General Hospital. Claire Clelland (MD, PhD) Dr. Clelland is building what every C9 carrier hopes for: a one-time fix at the genomic level. Her CRISPR work has shown the most complete reversal of C9 pathology demonstrated to date in patient-derived neurons. She is now partnering with Denali Therapeutics to solve the hardest remaining problem: getting that edit into the brain via a simple IV infusion. A project she is not yet public about is her work screening and optimizing gene therapy for the CNS using brain-dead trauma patients. This use of humans to improve gene therapy in a compartment nobody has successfully targeted is nearly unparalleled in utility for C9 and other neurological diseases. The cost for a first-in-human dose is ~$10M. This is one of the projects that should be proposed for funding by CureC9. Dr. Clelland chose C9orf72 because her patients have FTD. The most common cause of familial FTD is the C9 repeat expansion, so to cure FTD she needs to cure C9. Beyond the science, she brings a focus on translation that keeps every conversation grounded in what actually matters: getting a therapy to patients. Jenna Gregory (MD, PhD) Dr. Gregory is developing an early warning system for neurodegenerative disease, focused on detecting pathology long before clinical symptoms appear. Her work with RNA aptamers identifies TDP-43 pathology with unprecedented sensitivity, and her skin biopsy research has demonstrated detectable pathology up to 26.5 years before diagnosis, opening the possibility of transforming presymptomatic monitoring from a source of uncertainty into a strategy for timely intervention. Her research is driven by a central question: not just what is happening in disease progression, but when it can first be detected and acted upon. Beyond her own laboratory, Dr. Gregory serves as a co-investigator on a research program using synchrotron X-ray fluorescence imaging at the European Synchrotron Radiation Facility to investigate the C9orf72 paradox. Her team leads the pathomolecular profiling and low-field MRI platform aimed at translating nanoscale metal–aggregate signatures into a scalable diagnostic tool. She also builds and leads large presymptomatic research cohorts designed to enable early-stage disease discovery and intervention trials. As a practising pathologist and clinical lead for a major tissue bank, she integrates patient-derived biospecimens, clinical phenotyping, and molecular pathology to create resources that support collaborative discovery across the ALS research community. A gift to the CureC9 Program is the most powerful statement you can make in support of the people living with C9-driven ALS and FTD, and the carriers waiting for a treatment that does not yet exist. Your donation funds the research most likely to materially alter C9 disease — vetted by a Scientific Advisory Board drawn from leading ALS/FTD scientists. Every dollar flows through the Peter Cohen Foundation with no overhead, and at indirect cost rates below 10 percent at each funded institution. Your generosity makes it possible for the CureC9 Program to fund its first approved project and the work that follows. With your support, we will deliver the platform on which the next generation of genetic ALS and FTD therapies is built, and bring treatments within reach of the community that needs them most. Where possible, we commit to translating findings beyond C9 ALS/FTD. Tax Disclosure Gifts to the CureC9 Program are tax-deductible. EverythingALS is a brand of Peter Cohen Foundation, a non-profit 501(c)(3): EIN 84-3055901. The CureC9 Program is a research program of EverythingALS.

PC: Peter Cohen PC: Peter Cohen Make a Gift to EndALS 100% of your generous donation will be applied to help people with ALS directly with their expenses and ALS research. Gifts to EverythingALS are tax-deductible EverythingALS is brand of Peter Cohen Foundation, a non-profit 501(c)(3): EIN 84-3055901 Donation Amount $ Is this donation in honor or memory of someone? * Yes No Donation in Honor of Do you want the honoree to be notified of your donation? Donate Redirecting to Payment Screen.. Thank you to our donors who have made EverythingALS Possible A gift to EverythingALS is the most powerful statement you can make in support of the people with ALS Your donation acts as a catalyst to help people with ALS by providing matching funds from sponsors and funds that people with ALS are able to raise from within their own circles. Your generosity makes it possible for EverythingALS team to continue helping people with ALS. With your support, we will grow research to bring diagnostics and treatments to market working with the collaborators across the globe and create support for Expanded Access to make clinical trials accessible to all. Gifts to EverythingALS are 100% tax-deductible. EverythingALS is brand of Peter Cohen Foundation, a non-profit 501(c)(3): EIN 84-3055901

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. Advances in ALS Research & Innovation Invite your followers, community, and colleagues to your Expert Talk by clicking on the social media icons below. You can also download the event graphic for sharing. Facebook LinkedIn X Download Event Graphic

Co-hosted by: Digital Endpoints & Biomarkers July 26th & 27th, 2026 We are excited to host our fourth annual Digital Endpoints and Biomarkers Summit Agenda TBA Attendees Location Coming Soon Agenda Bristol Meyers Squibb - 250 Water St, East Cambridge, MA 02141 Anchor 7 Past 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

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 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. Fireside Cha t JOIN US J oin us for an opportunity to be with caring people who w ish to chat, listen, share, and learn. Fireside Chat with the Pathfinders Wed, May 06 Virtual Event REGISTER Our Hosts McFinn Lovere ALS Advocate & Pathfinder McFinn Lovere was diagnosed with ALS in 2006 at the UCSF, he was only able to move his head and two fingers. His spirituality and team of caretakers gave him HOPE and he is documented as the 42nd "ALS Reversal" by Dr.Bedlack. At EverythingALS, he aims to bring meaning, hope, and an uplifting atmosphere to a community that he knows very intimately and one that needs it most. His email address is mcfinn@everythingals.org Kathleen McCallum Pathfinder Kathleen McCallum, and for the past two years, I have been helping my friend Willard, who was diagnosed with ALS in 2022. There is hope, and if I can help provide it for you, please contact me at kathleen@everythingals.org Faith Oremland Pathfinder Faith Oremland's son was diagnosed with ALS in January 2022. If you are dealing with the challenges of being a parent to a child with ALS, issues with family communications, and learning how to live positively in the face of ALS, please get in touch with me at faith@everythingals.org Joe Redmond Pathfinder Joe Redmond was diagnosed with ALS in 2012. If I can make your journey any easier, or if you have any questions, let me help you find answers. My hope is to be the resource you need. Reach out to me at joe@everythingals.org Monica Martinez Pathfinder Monica Martinez was diagnosed with ALS in 2023. Welcome to Pathfinders! We are here to support, guide, and walk with you on this journey. You are not alone! WE GOT THIS! TOGETHER WE ARE BETTER THAN ALS! Reach out to me at monica@everythingals.org Cathy Cummins Pathfinder Cathy Cummins was diagnosed with ALS in 2008. Chiropractor, professor, and former elite athlete, now living with ALS and dedicated to guiding others through resilience and adaptation. As a Pathfinder, I share insights from my healing journey to inspire strength and community. Reach out to me at cathy@everythingals.org Chris OBryan Pathfinder Chris OBryan was diagnosed with slow progressing ALS in 2014. I’ve lived with familial ALS since 2014, shaped by my mother’s journey. I’ve learned each path differs, value preparation, accept ups and downs, and offer support so no one feels alone. Reach out to me at chris@everythingals.org Willard Blackwell Pathfinder Willard Blackwell was diagnosed with ALS in May of 2022. A professional singer and musician leading the Gator Nation Band. John Hudacek Pathfinder John Hudacek was diagnosed with ALS in November 2021. He is a slow progressor. Now is the time to discover the hidden strength in each of us. I am honored to hold your hand on this journey, reach me at john@everythingals.org Ivonne Vaughn Pathfinder Ivonne Vaughn was diagnosed with ALS in January of 2025. My goal is to help and encourage those with ALS (pALS), those caring for ALS loved ones (cALS) and to share the HOPE I have in my ALS journey. We all need good listeners in our lives. As a Pathfinder, I am here to listen, support, and encourage you. Reach out to me at ivonne@everythingals.org . Shawn Penno Pathfinder Shawn Penno was diagnosed with ALS in September 2023. He has been a care aide for 25 years, 2 in long-term care and the rest in the Community. Please reach out if you need someone to 'vent' to, help with problems, or someone to talk to alleviate the isolation shawn@everythingals.org Siddu Tummala Pathfinder Siddu (Sridhar) Tummala is the CEO of Cresido Analytics. Here to support people in our community residing in India. If you live in India, please connect for support. Reach out to me at siddu@everythingals.org Anthony (Tony) Martin Varela Pathfinder Anthony (Tony) Martin Varela was diagnosed with ALS in April of 2023. I keep a positive outlook as much as I can, but staying busy seems to keep my mind off of it and works the best. I am looking forward to helping in any way I can. Reach out to me at tony@everythingals.org Wilbert Greenfield Pathfinder Wilbert Greenfield is 54 years of age. Living with ALS has taught me resilience and to cherish every moment. I adapt creatively, find joy in small victories, raise awareness, support others, and anchor myself in faith, strength, and hope.. Reach out to me at will@everythingals.org Tim Fulham Pathfinder Tim Fulham was diagnosed with ALS in 2024. I’m a former high school biology teacher and longtime pharmaceutical and medical sales leader who later returned to the classroom. After being diagnosed with ALS, I began sharing my journey to support others. I focus on gratitude, resilience, and living fully each day with my family and loved ones. Reach out to me at tim@everythingals.org

EverythingALS in the News Click here to VIEW our publications Publications SEPTEMBER 2025 3 American Business Women Who Are Making A Difference In The World September 22 is American Business Women’s Day when we celebrate the achievements of the many successful women entrepreneurs and business leaders who are thriving amid the challenges of our ever-changing political and economic environment. Read more SEPTEMBER 2025 Invisible battles: The fights we don’t see until it’s too late High blood pressure, often referred to as the “silent killer,” is one of the most common yet ignored threats to health, affecting nearly 50% of adults in the U.S. Lacking symptoms, it can escalate into a hypertensive crisis triggering stroke, heart attack and kidney damage. The leading expert and chair of the latest American Heart Association guidelines breaks down what the numbers mean, why so many people remain undiagnosed and how small changes in lifestyle can save lives. Read more AUGUST 2025 Confidence Through Health Indu Navar, CEO of EverythingALS.org, provides us insight into the challenges and benefits of merging technology advancements with the healthcare system. In just a few short years, Indu has brought together multiple players in the neurological care area to improve the speed and capacity for patient care. Read more JULY 2025 Research Moves Slowly. Rare Diseases Don’t—So Patients Aren’t Waiting When Casey McPherson became a father, his purpose became clear. He needed to raise his daughter, Rose, to be loving, courageous, healthy and strong. He needed to protect her. Read more JULY 2025 It was already difficult enough for patients and caregivers dealing with severe illness. Indu Navar set up Everything ALS to help people with that process. Now things are about to get more difficult. Indu gives advice on this MM as to her organization and how it can help navigate the ever changing healthcare landscape. Read more MAY 2025 10 Things You Should Never Say to a Caregiver Avoid these platitudes, and learn what to say instead. Read more MAY 2025 KBOO's Lexus Ponce interviews nurse practitioner Martha Beach about how people with serious medical conditions can prepare in the face of more frequent emergencies like wildfires. Read more APRIL 2025 Bay Area app uses AI to help people with early detection of ALS symptoms A former tech executive who lost her husband to amyotrophic lateral sclerosis, ALS, hopes her app will help people with the early detection of ALS symptoms. Read more APRIL 2025 The Ice Bucket Challenge Is Back: Why Some Are Criticizing the 'Rebranding' of the Viral Trend 11 Years Later Students from the University of South Carolina started a recent campaign using the ice bucket challenge to raise mental health awareness Read more APRIL 2025 Everything ALS AI app helps connect thousands to clinical trials Read more MARCH 2025 I started a nonprofit to fight ALS after my husband's death. Here's how tech and AI can help us find a cure. Indu Navar has spent her career in tech, building and investing in organizations in Silicon Valley. She founded the Peter Cohen Foundation and EverythingALS after her husband died of ALS. Cohen had a long tech career, too. He built Amazon Mechanical Turk and AWS at Amazon. Read more MARCH 2025 App connects people with ALS, caregivers to supportive tools, guidance EverythingALS Pathfinders program offers one-on-one support with people diagnosed with ALS MELBOURNE, Fla. – Every 90 minutes, someone gets diagnosed with ALS. And every 90 minutes, someone dies from the disease. There’s no cure and the statistics are discouraging, but there’s a mobile app that’s creating hope for people living with ALS and their caregivers. Read more FEBRUARY 2025 Denham Springs man diagnosed with ALS helping to connect community DENHAM SPRINGS, La. (Louisiana First ) — Joe Redmond had a successful career as a radio and music executive in Louisiana and Tennessee for 40 years. Over time, he started having trouble with his voice and speaking. “I was slurring and often asked to repeat things so I knew something was wrong,” he said. Redmond saw many doctors over five years. Finally, he was diagnosed with Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. This is a deadly neurodegenerative disorder that impacts motor neurons in the brain and spinal cord. Read more FEBRUARY 2025 Weekends with Larry Marino Podcast Read more JANUARY 2025 Former music exec on losing voice to ALS – and finding hope in community; rise in Islamophobia after Bourbon Street attack A diagnosis of amyotrophic lateral sclerosis, or ALS, is difficult for anyone to hear. But that was especially the case for Joe Redmond, a music executive from Denham Springs who spent his career in radio. While he is losing his voice, Joe has been determined to take advantage of all the opportunities he has, including working with the Team Gleason organization, and a new caregiving program called Pathfinders. Read more DECEMBER 2024 Minnetonka woman helping connect ALS community through app "Pathfinders" MINNETONKA, Minn. — A Minnetonka woman is helping connect the ALS community through an app. On Jan. 5, 2022, Faith's son, Scott, was diagnosed with ALS. ALS is a fatal neurological disease that affects nerve cells in the brain and spinal cord. Scott was 50 years old at the time of his diagnosis. He was a marathon runner and avid cyclist. Read more SEPTEMBER 2024 EverythingALS Launches App for ALS Community New version of the app will connect people with ALS while collecting data to support research. EverythingALS, a technology- and data-focused nonprofit, has launched an app to support people living with amyotrophic lateral sclerosis (ALS), their families and caregivers, researchers, and health-care professionals. Read more SEPTEMBER 2024 EverythingALS launches new app version for broader ALS community Patients and caregivers can access resources, contribute to ALS research EverythingALS has launched a new version of its mobile app that now includes community support, artificial intelligence-powered chat assistance, and enhanced research opportunities to better serve people with amyotrophic lateral sclerosis (ALS) and their caregivers. The app, which was previously designed only for people taking part in observational studies, has been expanded to also include patients and caregivers from the broader ALS community, allowing them to access vital information and resources, and to contribute to ALS research. “We invite everyone in the ALS community, from newly diagnosed individuals to long-term patients and caregivers, to explore the new features and benefits of this comprehensive app,” the nonprofit EverythingALS said in its press release . Read more DECEMBER 2024 EverythingALS and Compass UOL partner to advance artificial intelligence and computational biology by training and supporting 2,000 Top Talent to Cure ALS at Amazon web services(AWS) re:Invent 2024 in support from AWS LAS VEGAS, Dec. 4, 2024 /PRNewswire/ --A partnership between Compass UOL, an AI transformation services company, and non-profit EverythingALS is using artificial intelligence to address Amyotrophic Lateral Sclerosis (ALS), one of the most intractable puzzles in medicine. EverythingALS and Compass UOL officially launched their partnership on December 4 at 4:00 PM PT at the annual AWS re:Invent conference at the AWS for Healthcare and Life Sciences booth within the AWS for Industries Pavilion. Read more MAY 2024 EverythingALS CEO Indu Navar and Chairman Bill Nuti talk ALS awareness month with Jim Cramer Read more MARCH 2024 EverythingALS Launches the Vision 2030 AI Hub : Charting the Path to an ALS Cure and Advancing Neurodegenerative Disease Research Vision 2030 will utilize advanced technologies and an innovative operating model for research and drug development Read more JUNE 2023 AI could provide breakthrough for early diagnosis of rare diseases For people living with rare diseases, one of the major challenges is being able to receive a rapid and accurate diagnosis. Often the process takes years, but Ben Hargreaves finds that there is a new wave of research utilising AI that could change this. Read more JUNE 2023 Could AI help diagnose diseases like ALS more quickly? BOULDER, Colo. (KDVR) — Michael Robinson was diagnosed with amyotrophic lateral sclerosis, or ALS, almost eight years ago when he was just 45 years old. “I was late for a meeting and went to go run and couldn’t get my right leg to move, and being a physician and knowing what I know, my immediate thought was I think I have ALS,” the Boulder resident said. Read more JUNE 2023 EverythingALS: Searching for a Cure with AI EverythingALS, a patient-focused non-profit, is currently conducting the world's largest AI-powered ALS study. John Howell is joined by Indu Navar, Founder of EverythingALS, to discuss the details of the study and history behind the non-profit. The study is still taking participants, both those who have ALS and those who don't. For more information, visit everythingals.org. Read more JUNE 2023 Non-profit Conducts Studies to Help with ALS "The way I look at it, as technology is here today. We can make an impact to people with ALS today. So, what we are doing is we're looking at these progression markers and applying this to clinical trials that's happening today. So, we work with about 11 pharma companies that partnered with us on this initiative," Founder and CEO of EverythingALS Indu Navar said. Read more JUNE 2023 Everything ALS works to help doctors and families diagnose the disease faster While reflecting on the process that her family endured while her husband battled the disease, Navar says, "There is something called diagnosis fatigue. And it really creates a lot of very, very deep, deep sorrow and grief just going through the diagnosis because it is, I say, it's death by a thousand cuts." Read more JUNE 2023 Tech entrepreneur aims to use artificial intelligence to speed up diagnoses of ALS DETROIT LAKES — Using artificial intelligence and machine learning, a tech entrepreneur is going after the fatal disease of ALS – also known as Lou Gehrig's Disease. Read more JUNE 2023 Bringing Technology to ALS CARE Indu Navar, founder of EverythingALS, joins Amy & JJ. And, just in time for the Fargo walk. Read more APRIL 2023 "EverythingALS" joins Harvard, MIT and IBM for unique research EverythingALS founder Indu Navar joined Kyla Grogen to discuss the unique research they are conducting with Harvard, MIT, and IBM. Watch the clip to learn how recording your voice for 20 minutes a week could be the key to finding a quicker way to diagnose and treat ALS. Read more APRIL 2024 Listen Up: Emerging Vocal Biomarker Could Aid ALS Drug Development It’s been a disappointing spring for the amyotrophic lateral sclerosis community, with the Phase II failure of Sanofi and Denali Therapeutics’ candidate and Amylyx’s decision to pull Relyvrio from the market . But drugmakers are hopeful that the development and validation of novel biomarkers for the disease, including neurofilament, genetic markers and, more recently, speech, can help improve patient care and expedite the development of effective treatments. Read more MARCH 2024 Deciphering the cellular mechanisms behind ALS At MIT, Fraenkel works in the Department of Biological Engineering and co-directs the Computational Systems Biology graduate program. For the study of ALS, he and his collaborators at Massachusetts General Hospital (MGH), including neurologist and neuroscientist Merit Cudkowicz, were recently awarded $1.25 million each from the nonprofit EverythingALS organization. The strategy behind the gift, Fraenkel says, is to encourage MIT and MGH to increase their collaboration, eventually enlisting other organizations as well, to form a hub for ALS research “to break down barriers in the field and really focus on the core problems.” Read more MARCH 2024 A new way to detect ALS in patients ALS is a crippling disease that affects the nervous system. There is a new and easier way to detect ALS. ALS also known as Lou Gehrig’s disease, affects the nervous system by weakening muscles and ultimately paralyzes the patient. Indu Navar is the CEO and Founder of Everything ALS, she says there is a new effort to help ALS patients by using AI machine learning. Read more MARCH 2024 Citizen-Driven Research Aids Development Of Digital Biomarkers For ALS March 20, 2024 | When it comes to research on amyotrophic lateral sclerosis (ALS), every stakeholder—most especially patients—knows time is of the essence. From diagnosis to death, life expectancy from the debilitating neuromuscular disease can be two years or less. “The time people give us is currency,” says Indu Navar, founder of the nonprofit Peter Cohen Foundation operating as EverythingALS. Read more JANUARY 2024 Citizen-Driven Research Aids Development Of Digital Biomarkers For ALS When it comes to research on amyotrophic lateral sclerosis (ALS), every stakeholder—most especially patients—knows time is of the essence. From diagnosis to death, life expectancy from the debilitating neuromuscular disease can be two years or less. “The time people give us is currency,” says Indu Navar, founder of the nonprofit Peter Cohen Foundation operating as EverythingALS. Read more JANUARY 2024 Governor Hochul proposes historic $25m budget for ALS research in New York A groundbreaking moment in the search for a cure for ALS. Governor Hochul is looking to set aside a historic amount of money for ALS research in New York. She made the announcement in her budget address last week, but in this week's Wellness Wakeup, you'll see for the governor and many others, it's personal. Read more DECEMBER 2023 10 unexpected ways life changes when you become a family caregiver Some family caregivers go into it knowing that caring for a loved one is their fate, while others are unexpectedly thrust into it. But whether it’s expected or not, the family caregiving journey is rarely predictable, says Jody Gastfriend , a licensed clinical social worker, author and senior care consultant. Read more DECEMBER 2023 Slowing ALS with Speech: Study leverages IBM’s AI, creates digital biomarkers EverythingALS is working with clinical research stakeholders from IBM Research, Massachusetts Institute of Technology, and Harvard University in a longitudinal study focused on early disease detection based on patterns noted in audiovisual sessions. Read more OCTOBER 2023 Former tech executive leads nonprofit to help those with ALS Moving from tech entrepreneurship to caregiving was never a step Indu Navar expected to make, but this leap of faith turned out to be transformative. Today, she is making use of both skill sets as the CEO and founder of EverythingALS , a nonprofit patient-led advocacy group focused on creating digital biomarkers for early detection of ALS. Read more SEPTEMBER 2023 EverythingALS Announces Student Fellow Scholarship Awards and Expanded Student Ambassador Program aims to accelerate ALS Research SEATTLE, Sept. 27, 2023 (GLOBE NEWSWIRE) -- EverythingALS, a citizen science research organization dedicated to developing cure for ALS, announced today the Student Fellow Scholarship Awards and the expansion and continued enrollment of student Ambassadors program. Both programs are core pillars of the EverythingALS Care to Cure™ impact model. Read more SEPTEMBER 2023 Local ALS Association Chapter’s ‘Walk to Defeat ALS 2023’ held in Salem SALEM, Va. (WFXR ) — On Sept. 16, different ALS Association Chapters across the nation hosted their annual Walk to Defeat ALS. Our local chapter in Virginia was no different. The event was to raise funds for amyotrophic lateral sclerosis or Lou Gehrig’s disease. It’s a rare progressive neurological disorder that affects nerve cells in the brain and spinal cord resulting in weakened muscles. Currently, it’s a terminal diagnosis, meaning it has no cure. Read more AUGUST 2023 New $400,000 Grant Supports EverythingALS.org and Mass General Hospital (MGH) to Develop NeuroLens, a Digital Diagnostics technology initiative for early detection of Amyotrophic Lateral Sclerosis (ALS) SEATTLE--(BUSINESS WIRE )--EverythingALS today announced it has received $400,000 from ALS Finding a Cure® and The ALS Association to support studies for the identification of early digital diagnostic markers of ALS. Read more AUGUST 2023 Buffalo's ALS ambassador raising awareness ahead of weekend walk ORCHARD PARK, N.Y. (WKBW) — It is a disease that robs people of their ability to walk, talk, swallow and eventually breathe. ALS, often called Lou Gehrig's Disease most commonly afflicts people between the ages of 40 and 70. As many as 30,000 Americans have the disease at any given time. This Saturday, Buffalo will be hosting the Western New York Will Walk to Defeat ALS , at Delaware Park. Read more JULY 2023 Merging as EverythingALS, 2 nonprofits seek to better treatment “We firmly believe that the proliferation of non-profit organizations in this field leads to duplication of efforts, wasting precious time, money, and most importantly, lives,” Bill Nuti, CureALS’ founder and CEO and now chairman of the board of directors for Everything ALS, said in a joint press release . Read more JULY 2023 EverythingALS and CureALS Join Forces to Discover a Cure for ALS “They reflect our commitment to advancing research, improving diagnosis and therapies, leveraging data for analysis and technology integration, and ensuring comprehensive support for people living with ALS and FTD.” Read more JULY 2023 California tech company using artificial intelligence in ALS studies BOULDER, Colo. — More than 5,000 Americans are diagnosed with amyotrophic lateral sclerosis (ALS) each year, and roughly 600 people are here in Colorado, according to the Rocky Mountain chapter of the ALS Association. Read more JUNE 2023 Groundbreaking Nonprofit, CureALS Founded and Launched by Former NCR Chairman and CEO Bill Nuti to Eradicate ALS NEW YORK--(BUSINESS WIRE )--CureALS, a pioneering nonprofit organization dedicated to eliminating ALS (Amyotrophic Lateral Sclerosis) and other complex neurodegenerative diseases such as Alzheimer’s, Parkinson’s, and Frontotemporal Dementia, has officially launched today. Read more APRIL 2023 How AI and Facial Recognition Could Spot Stroke and Other Diseases Researchers are training computer algorithms in efforts to quickly identify ailments and speed treatment. Patients at Johns Hopkins Hospital who are suspected of having a stroke might get an unusual request from physicians: Can we film your face ? The doctors’ goal is to identify stroke patients by facial characteristics instead of waiting for brain scans or blood tests, helping speed both treatment and recovery. Read more APRIL 2023 Non-profit behind world's largest AI-powered ALS study ST. PETERSBURG, Fla. — ALS non-profit EverythingALS is using artificial intelligence and other technologies to help find a way to diagnose ALS and other neurological diseases faster and find a cure. It’s partnering with healthcare companies in the effort and conducting speech research to spot and track early signs of ALS. Read more APRIL 2023 Project CommUNITY Women Breaking Barriers: Indu Navar, Founder of Everything ALS "I made a promise to him that I will keep fighting for him and the disease,” Navar said. “And we need to prevent from other people going through what we went through. I want to keep them alive through this work. And I really feel it was such a terrible experience for us that I really don't wish this on anybody" Read more APRIL 2023 How AI CAN LOOK INTO YOUR EYES AND DIAGNOSE A DEVASTATING BRAIN DISEASE “The eyes are the windows to the soul.” It’s an ancient saying, and it illustrates what we know intuitively to be true – you can understand so much about a person by looking them deep in the eye. But how? And can we use this fact to understand disease? Read more MARCH 2023 STUDY SEEKS TO IMPROVE ALS DIAGNOSES WITH AI Speech recognition patterns can give clues to neurological conditions A study is underway to determine AI’s suitability for diagnosing the neurological disease ALS. The study is using AI-powered virtual assistants to detect potential signs of ALS in a participant’s speech patterns and facial gestures. Read more FEBRUARY 2023 LOCAL RESIDENT REVEALS HIS ALS JOURNEY Learn about the ALS journey of local resident Tommy Culpepper and find out you can support him! - KNWA & FOX24 - Northwest Arkansas & River Valley News + The ALS Association Arkansas Chapter Read more FEBRUARY 2023 What Dr. Chatbot ordereD Your doctor could be a robot sooner than you think. The pandemic and its toll on the health care sector spurred interest in the role artificial intelligence can play in easing burdens and improving efficiency, particularly via chatbots to tackle routine tasks like scheduling appointments and billing issues. But evidence is building that suggests chatbots are already pretty good at giving health advice. Read more JANUARY 2023 Montgomery County man with ALS part of study that aims to find root cause of disease "When a man died, he was said to have gone west," repeated 59-year-old Todd Kelly into a computer. He isn't reading a best-selling novel, but reciting speech to help treat and cure ALS. "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. Read more JANUARY 2022 Getting Vocal In December of 2016, Valerie Geerer was doing her normal lunchtime walk with work colleagues when a friend noticed something off about her gait. “I remember she said, ‘Is there something the matter with your foot?’” the fifty-nine-year-old Stamford resident recalls. “I told her I felt fine. A month later I was tripping myself. It was ironic. Six months earlier, my husband Michael and I were climbing mountains in Utah. And suddenly I couldn’t walk without stumbling.” Read more DECEMBER 2022 ALS genetic carrier finds the “path to higher ground” in clinical research ALS genetic carrier finds value in EverythingALS study leveraging digital biomarkers as a means to create tools for early detection of ALS and potentially other neurological diseasese. Read more DECEMBER 2022 New way to detect ALS; early diagnosis critical for treatment LAS VEGAS (KLAS) — Every 90 minutes, someone gets diagnosed with amyotrophic lateral sclerosis, or ALS. It’s a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and there is no cure. Read more NOVEMBER 2022 Woman's Husband's Health Journey Inspires Everything ALS NBC10’s Erin Coleman speaks to Everything ALS founder Indu Navar about her husband’s own ALS diagnosis and how the group is working to better ALS research. You can help the fight through Everything ALS or at the 2022 Walk to Defeat ALS. Read more NOVEMBER 2022 Walk to Defeat ALS happening in North Las Vegas Indu Navar, founder of EverythingALS, joined us to talk about how your participation helps raise funds and awareness. WATCH HERE NOVEMBER 2022 Non-profit conducts study to diagnose ALS quicker LANSING, Mich. (WLNS) — In the 150 years since ALS was discovered there is still no cure or single test to diagnose the disease. The demand for more answers is what drove one woman to start up her own non-profit. EverythingALS began its research in 2021 and now they’re working toward diagnosing the disease faster. “I really want to help people who are going through this disease,” said Indu Navar, Founder of EverythingALS. The study analyzes data when it comes to physiological changes and the progression of the disease. Navar says she wants to shift the focus to the brain, something she believes isn’t understood well enough. READ MORE SEPTEMBER 2022 Q&A With Indu Navar, founder of Everything ALS Indu Navar, founder of Everything ALS, speaks with Pharm Exec about how she lost her husband to the disease and how she's trying to improve the way its diagnosed. Indu Navar Diagnosing ALS is a difficult process for patients experiencing symptoms. After the death of her husband, tech entrepreneur Indu Navar founded Everything ALS, and organization she hopes will refine and improve the way ALS and other neurological conditions are diagnosed. READ MORE OCTOBER 2022 New technology helping ALS patients in Louisiana BATON ROUGE, La. (BRPROUD) — ALS, often called Lou Gehrig’s disease, is a progressive motor neuron disease that gradually robs people of their ability to walk, talk, swallow, and eventually breathe. Indu Navar, the founder of EverythingALS, said, “ALS has no known cause or cure and so patients suffer for years not knowing what is wrong and have to go through rigorous testing and a process of elimination to finally get diagnosed. If they are diagnosed, there are no treatments. Life expectancy is two to five years.” READ MORE SEPTEMBER 2022 EverythingALS Joins Forces with Aural Analytics, FeetMe, ZEPHYRx and Others for a First-Of-Its-Kind ALS Research Study SAN FRANCISCO (PRWEB) SEPTEMBER 19, 2022 EverythingALS, a patient-focused non-profit that brings together people living with ALS, caregivers, physicians, researchers, and pharmaceutical companies to collaborate on an open innovation platform using cutting-edge technologies and data science to improve progression measurements for neurological disease like Amyotrophic Lateral Sclerosis (ALS), has initiated a new study, The Radcliff Study, with partners in the quest to find a diagnosis, treatment, and cure for ALS... READ MORE AUGUST 2022 Groundbreaking research involving artificial intelligence could diagnose ALS patients sooner 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. In 2019, Mark Weston and his wife, Kathleen, had their retirement all planned out. "We were all set up for a sail off into the sunset and have a really fun retirement," Weston said. "We had, we bought a house on the coast of Maine several months earlier." A week before the big move, he got a life-changing diagnosis. READ MORE AUGUST 2022 NeuroSense Joins EverythingALS Open Innovation Consortium; Set to Enroll US and EU Patients in Phase IIb Study NeuroSense's support will aid EverythingALS with ground-breaking patient research in a joint effort to develop treatments LOS ALTOS, Calif. and CAMBRIDGE, Mass., Aug. 2, 2022 /PRNewswire/ -- EverythingALS , a patient-focused non-profit that brings together patients, caregivers, physicians, researchers, and pharmaceutical companies using technological innovations and data science to support efforts to improve care for those living with a neurological disease like Amyotrophic Lateral Sclerosis (ALS), today announced NeuroSense Therapeutics Ltd. (NASDAQ: NRSN ) ("NeuroSense"), a company developing treatments for severe neurodegenerative diseases, as a new collaborator in the effort to identify treatments and a cure for ALS. READ MORE AUGUST 2022 ‘Death by 1,000 cuts:’ How emerging tech could change the journey for ALS patients EverythingALS aims to speed drug development through improved diagnostics. in 2016, Indu Navar’s husband, Peter Cohen, experienced the first symptom of what turned out to be amyotrophic lateral sclerosis (ALS), a progressive degenerative disease commonly known as Lou Gehrig’s disease. EverythingALS founder Indu Navar Permission granted by EverythingALS/Indu Navar “His foot was just acting weird,” says Navar, who founded the California nonprofit EverythingALS two years ago. “We didn’t know where to go, so we went to a chiropractor,” she says. READ MORE JULY 2022 Healthbeat: New ALS research driven by patient-focused non-profit SCRANTON, LACKAWANNA COUNTY— 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. There is no known cure despite efforts to better understand it and treat it. ALS is a puzzling disease for certain with so much needing to be learned about it. READ MORE TOMMY EDWARD CULPEPPER,Jr MOVIE CONNOISSEUR JULY 2022 Bentonville man works to help diagnose ALS sooner 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. “I love movies.” For Culpepper, movies have always been his saving grace. Even when he was a kid growing up in St. Louis, Missouri. “I grew up in the Peabody Projects and the home environment wasn’t the greatest,” he said. “Star Wars, Blade Runner, Highlander. Movies like that are excellent getaways for me.” Until he found himself in a nightmare that started in the doctor’s office... READ MORE JULY 2022 These 2 Surprising Traits May Predict ALS, New Research Says 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 research Amyotrophic lateral sclerosis (sometimes called Lou Gherig’s disease, or ALS ) affects around 15,000 Americans, with about 5,000 receiving a new diagnosis each year, according to the Centers for Disease Control and Prevention. READ MORE JUNE 2022 Continue that momentum from the ALS Ice Bucket Challenge by getting involved in a unique study - New Day NW Researchers want every American to start recording their voice daily. They believe this data could be used to eventually develop cures for ALS. #newdaynw READ MORE MAY 2022 Patients giving voice to ALS research 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. Brian Andre has been living with ALS for six years. “On average they only give you 2 to 5 years of life after diagnosis and some progress very quickly,” he said. “I’m really in a very small percentage of patients who see little or no progression. … My weakness is in my left side, left leg and arm. So it throws my gait off.” READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 Live At 9: Researchers Collecting Audio and Video to Help ALS Detection Remember the summer Americans took time to dump buckets of ice water on their heads to help fight the deadly disease ALS? This summer, there’s a more comfortable way to help researchers learn about ALS and other neurological disorders. Researchers want people to record their voices and upload them for study. READ MORE Austen Eadie-Friedmann before his diagnosis of amyotrophic lateral sclerosis or ALS MAY 2022 A Connecticut man is battling a fatal disease with ‘enormous courage’. Love and his work with an ALS group give him ‘purpose 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. The couple, now together for 18 years and married for five, loved their life traveling the world, sharing a passion for art. Then the devastating diagnosis arrived... READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 How high tech shoes could help doctors better understand ALS MOUNTAIN VIEW, Calif. - There is no cure for ALS, the progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, but a Silicon Valley nonprofit is hoping to change that. Starting Tuesday, EverythingALS , a Silicon Valley nonprofit and advocacy group, is starting its second research study involving ALS patients, using shoes with high-tech censors to track and study their movements. The study is open to 100 participants in the early stages of ALS, and is still accepting new participants.... READ MORE MAY 2022 Tech Tuesday: Using AI to fight ALS LANSING, Mich. (WLNS) — One non-profit organization is using technological innovations and data science to support those grappling with amyotrophic lateral sclerosis, otherwise known as ALS. EverythingALS was started by Indu Navar. READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 Bringing Awareness To ALS And Those Who Suffer From It In this podcast, we are joined by Indu Navar. Indu Navar is the CEO of Everything ALS, a company that prioritizes bringing awareness to Amyotrophic Lateral Sclerosis (ALS) and those who suffer from it. ALS is a neurological condition that affects the victim's motor neurons. This causes muscle atrophy all across the body, which can eventually cause suffocation and even death. LISTEN NOW APR 2022 Be The Good with Kate Cherichello Be the Good with Kate podcast- Kate Cherichello scheduled a taped interview with Indu for Wednesday, March 9th at 3:30pm EST to discuss EverythingALS and the research study. Episode went live on April 29th. LISTEN NOW FEB 28, 2022 MITSUBISHI TANABE PHARMA JOINS EVERYTHINGALS CONSORTIUM TO HELP ACCELERATE BIOMARKER DISCOVERY FOR NEUROLOGICAL DISEASES (San Francisco, CA)-- Today, EverythingALS.org (EALS), a patient-centric, citizen-based California nonprofit accelerating the discovery of digital biomarkers for neurological diseases such as amyotrophic lateral sclerosis (ALS), announced that Mitsubishi Tanabe Pharma Holdings America, Inc. READ MORE FEB 12, 2022 San Francisco based nonprofit launches new ALS research SAN FRANCISCO (KCBS SF) — A San Francisco-based nonprofit is recruiting average people to take part in ALS research. KCBS Radio’s Keith Menconi explains. READ MORE DEC 2021 ALS, Lou Gehrig’s Disease, takes many lives, Everything ALS is doing Deb Fabricatore lost her younger brother to ALS in 2014, and became involved in ALS advocacy. Indu Navar lost her husband in 2019 and immediately stepped up into action by building a nonprofit devoted to honoring her husband. READ MORE Bay Area Nonprofit Seeks 300 Volunteers in ALS Speech Study SAN FRANCISCO (CBS SF) — A Bay Area nonprofit dedicated to advancing research on an incurable — and fatal — disease of the nervous system is looking for 300 more people by the end of this month to participate in the largest-ever research project on the illness. READ MORE NOV 21, 2021 EverythingALS said it needs more than 300 volunteers for its study to combat amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease, an incurable, degenerative illness. READ MORE NOV 21, 2021 Bay Area non-profit looking for volunteers in Lou Gehrig diseases study OCT 2021 EverythingALS Launches “Stories and Innovation in ALS” Podcast October 21, 2021 (Silicon Valley, CA) – For an inside look at how ALS impacts patients and their caregivers as well as the innovations that researchers and clinicians are coming up with to find biomarkers, treatments, and cures for this life-threatening disease, start listening to the EverythingALS podcast , “Stories and Innovation in ALS.” EverythingALS (EALS) was founded in 2020 to help discover biomarkers – which are nonexistent -- and document the progression of ALS by launching the world’s largest speech study with more than 600 participants. READ MORE APRIL 2021 Accelerating Rare Disease Research TEDxSantaCatalinaSchool In this moving, TEDx talk, Indu Navar tells how she lost her husband, Peter Cohen, to ALS and what she is doing to bring together patients, families, researchers and people everywhere to change the way that rare diseases are looked at. WATCH VIDEO Digital Health InfoCast: Machine Learning for a Cause Canada has been an early leader in the AI space and there is no shortage of activity flourishing across the country. Today, we welcome Fanny Sie from Roche Canada and Indu Navar of Everything ALS to talk about machine learning and the End ALS Kaggle Challenge . LISTEN JULY 30, 2021 Indu Navar, CEO and Founder of EverythingALS, explores the roles of Artificial Intelligence, Machine Learning, and Brain Computer Interface in the search for a cure for ALS. She will also share innovative research studies on ALS detection, how Pharma can work with and support ALS patient advocates, and her key leadership lessons for digital health entrepreneurs and innovators. WATCH VIDEO JUNE 25, 2021 Impetus Digital PODCAST JULY 2021 New project to better identify and treat ALS uses AI and data sharing Through the AI CoE, Roche has collaborated with EverythingALS , AnswerALS, the Ontario Brain Institutes and ALS Canada to launch an open data science competition called the End ALS Challenge. READ MORE READ MORE Mar 29, 2021 THE STORY OF MODALITY.AI: HEALTHTECH AWARD WINNER Suendermann-Oeft states that one of the most significant achievements for them has been collaborating with the non-profit organization EverythingALS , as well as MIT, Harvard, and IBM to scale the number of Modality platform users to over 100 within three months for a study focusing on the early detection and improved prognostic accuracy of ALS ... "Jody O'Donnell introduced me to the founders of every Everything ALS , brother and sister, Murgesh Navar and Indu Navar, and Indu lost her husband to ALS a few years ago. Really, we just kind of hit it off from the get-go. Tremendous pair, both kind of serial entrepreneurs; they started multiple companies in the Bay Area and they just brought a passion and energy, a desire to do things quickly and challenge the status quo ... READ MORE April 30, 2021 interview with Katie Pecora for Patients Rising The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge , with the support of ALS Society of Canada , Ontario Brain Institute (OBI) and NetraMark Corp . The goal is to surface insights through an open data competition.. READ MORE Mar 29, 2021 EndALS Kaggle Challenge to TACKEL ALS EverythingALS Selected to Present at the American Academy of Neurology Virtual Annual Meeting EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science to support people with ALS, has been selected to ... READ MORE April 16, 2021 READ MORE Mar 25, 2021 Roche Canada AI Centre and EverythingALS to tackle ALS The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge, with the support of ALS Society of Canada, Ontario Brain Institute (OBI) and NetraMark Corp... Roche Canada Artificial Intelligence Centre and EverythingALS opens digital competition to tackle ALS EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science to support people with ALS, has been selected to ... READ MORE Mar 18, 2021

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PC: Peter Cohen PC: Peter Cohen Make a Gift to EndALS 100% of your generous donation will be applied to help people with ALS directly with their expenses and ALS research. Gifts to EverythingALS are tax-deductible EverythingALS is brand of Peter Cohen Foundation, a non-profit 501(c)(3): EIN 84-3055901 Donation Amount $ Is this donation in honor or memory of someone? * Yes No Donation in Honor of Do you want the honoree to be notified of your donation? Donate Redirecting to Payment Screen.. Thank you to our donors who have made EverythingALS Possible A gift to EverythingALS is the most powerful statement you can make in support of the people with ALS Your donation acts as a catalyst to help people with ALS by providing matching funds from sponsors and funds that people with ALS are able to raise from within their own circles. Your generosity makes it possible for EverythingALS team to continue helping people with ALS. With your support, we will grow research to bring diagnostics and treatments to market working with the collaborators across the globe and create support for Expanded Access to make clinical trials accessible to all. Gifts to EverythingALS are 100% tax-deductible. EverythingALS is brand of Peter Cohen Foundation, a non-profit 501(c)(3): EIN 84-3055901

Future Events Expert Talk Series Fireside Chats ALS Updates & Innovations Wed, Apr 29 Virtual Event RSVP Citizen Research on May 13th Wed, May 13 Virtual Event RSVP Introduction to PIONEER-ALS: The first vectorized antibody trial targeting TDP-43 in sporadic ALS Wed, May 27 Virtual Event RSVP Citizen Research on June 10th Wed, Jun 10 Virtual Event RSVP Citizen Research on July 8th Wed, Jul 08 Virtual Event RSVP Citizen Research on Aug 5th Wed, Aug 05 Virtual Event RSVP Citizen Research on Sept 2nd Wed, Sep 02 Virtual Event RSVP Citizen Research on Sept 30th Wed, Sep 30 Virtual Event RSVP Citizen Research on Nov 25th Wed, Nov 25 Virtual Event RSVP Citizen Research on Dec 23rd Wed, Dec 23 Virtual Event RSVP

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