2026 EverythingALS Digital Endpoints & Biomarkers Innovation Summit — Feedback Required * When you submit this form, it will not automatically collect your details like name and email address unless you provide it yourself. Name 1. Full Name* Next

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. LOGIN > Click here to Register or Login if you are in the study You can help advance ALS Research Join one, or more, of our current studies ALS Path to Trials Multi-modal study to match you to trials A new IRB approved study that meets you where you are. Whether you can track motor function, speech, or passive data, you'll build a personalized digital baseline so that when the right trial opens, you're already ready to enroll. I’m Interested ALS Austen Study Advancing the Diagnosis and Prognosis of ALS from Speech Our IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology and speech which includes both audio and video data. Click to Join ALS Gene Carrier Study Families Fight Together This study is focused on early detection of motor and speech changes using emerging digital technologies to support families affected by ALS and FTD. Click to Join Why Join the Study? Vivian Rojas If you are interested in the study, please contact us Your connection to ALS I am interested to participate in * Required The Speech Study to advance drug Trials The ALS Gene Carrier Study Path to Trials Are you enrolled in PREVENT ALS Study (DIALS Network at MGH/WashU or ALS Families Study at Columbia University)? Yes No Don't Know For more information click here . Do you use Assistive Devices ? For Walking For Breathing CPAP Other Cane Rollator Walker Wheelchair Other Where do you currently reside? Select your residence Submit

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

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

EVERYTHING ALS Student Ambassadors James Sagaser James Sagaser is a volunteer who joined EverythingALS in March 2020, seizing the opportunity to contribute and expand his knowledge of ALS when everything transitioned to an online platform during the COVID-19 pandemic. Eager to make a difference in the medical field, James is set to commence his journey as a medical student at CHSU in the upcoming fall of 2023. Fellow Bella Yarahmadi Bella Yarahmadi is a graduating senior at USC, majoring in Human Biology. As her family has been personally affected by ALS, she is grateful to have found this community. In being part of a determined, compassionate, and innovative team, she is hoping to apply her experiences towards a future in medicine and is fulfilled in being able to establish real patient connections. Fellow Lily Xia Lily is a senior at the University of Southern California studying human biology and aims for a future career as a physician. She currently works as a medical assistant at a private practice and as a cell biology research assistant at the USC School of Gerontology. She joined EverythingALS in 2021 to learn more about ALS by building relationships with those affected by the disease, and hopes to contribute to improving how ALS is diagnosed and treated. Student Ambassador Alex McKnight Alexandra McKnight is a senior at Wake Forest University, majoring in Health and Exercise Science with a minor in Chemistry. On campus, Alexandra is the Alumni Director for the campus-wide Hit The Bricks philanthropic event that fundraises for the Brian Piccolo Cancer Research Fund. She also serves as a member and captain of Wake Forest’s Dance Team, competing yearly at Nationals and cheering on her fellow sports teams. Student Ambassador Olivia Manogaran Hi I’m Olivia. I’m from Toronto, Canada and I’m currently studying biology. I joined ALS because I am able to foster connections with patients and raise awareness about ALS. Student Ambassador Casey Duan Casey graduated from the University of Southern California and hopes to pursue a career in medicine. She joined EverythingALS during her first year at USC and found EALS to be one of her most meaningful involvements these last few years. She is excited to engage with you all and to continue growing our EALS community! Fellow Bryan Truong Bryan Truong recently graduated with a BA in Psychology with a minor in Spanish from the University of Texas at Austin. He has been with EverythingALS for about a year now and is honored to obtain leadership and professional experience while engaged in this environment. He is excited to begin his journey as an EverythingALS Fellow! Fello w Judy Chae My name is Judy Chae, and I am a senior at USC majoring in Human Biology. I was born in South Korea, but grew up in Irvine, CA for the most part. I joined EALS because I wanted to partake in research and ongoing studies that are able to make real-time impact in those struggling with ALS. To be a part of long-term research with tangible changes has always been my goal, and EALS is an amazing opportunity for it! Student Ambassador Karina Parikh My name is Karina Parikh and I am a rising junior at the University of Southern California. I am pursuing a B.S. in Human Biology, while also working towards a M.S. in Global Medicine. I am currently part of a few different pre-health organizations on campus and I participate in research at Children’s Hospital Los Angeles. Student Ambassador

Digital Biomarkers and Endpoints Summit August 25 and 26, 2024 | Boston, MA “Accelerating the Path from Validated Endpoints to Biomarkers and Beyond” Pre-Event Networking & Listening Session with "Hop" Sunday, August 25th 4:00pm, Gillette Stadium, Foxborough, MA Join us for a special evening at the Zac Brown Band/ Kenny Chesney Concert is holding the opening reception with John "Hop" Hopkins and his family. Hop is the lead guitarist for the world-famous Zac Brown Band, and his family-run charity Hop on a Cure goes everywhere the band goes to raise awareness and funds for ALS research and support. In an intimate setting prior to the band performing, we'll be talking with Hop and his family about their life with ALS and his fight to keep writing and performing music with the band; and we'll learn more about his charity Hop on a Cure. Digital Biomarkers Summit Monday, August 26th 7:30am: J&J Offices, Cambridge MA Our friends at J&J have generously offered to host us this year in the same venue as last year, 320 Bent St, Cambridge, MA . We will be on the first floor, with the reception desk inside the main foyer, joined by a special surprise guest! We'll end the day with a "thank you" reception in the same building to ensure we have time to reflect and spend some extra time together before we head out. Hosts & Speakers Indu Navar, MSCS CEO and Founder EverythingALS Lyle Ostrow, MD, PhD ALS Clinician-Scientist Temple University Silviya Bastola Clinical Project Research Manager EverythingALS Janie Gobeli pALS EverythingALS Melanie Leitner Scientific Advisory Board Member Carney Institute for Brain Science at Brown University Brendan O'Leary Digital Health technology, regulation, and policy consultant Henk Schuring Chief Regulatory and Commercialization officer Prilenia Therapeutics James Berry, MD, MPH Chief of the Division of ALS and MND, Neurology MGH, HMS Stephanie Henze Research & Design Strategy EverythingALS Mindy Uhrlaub Author Bryan Hansen Director of Data Science and Digital Health Johnson & Johnson Innovative Medicine Eduardo Locatelli Physician Executive Director Neurologist & Researcher NSU Neuroscience Institute Julian Pellar Lead Data Scientist EverythingALS Joel Schwartz Scientific Director - Digital Biomarkers Bristol Myers Squibb Merit Cudkowicz Neurologist & Clinical Researcher MGH Christian Rubio Digital Health Strategy EverythingALS Terry Heiman-Patterson Professor of Neurology Lewis Katz School of Medicine at Temple University John Hudacek pALS McFinn Lovere Pathfinder EverythingALS Anusha Rao Student Ambassador EverythingALS David Shulman Head of Enterprise Investment at Wells Fargo Person Living with ALS Ernest Fraenkel, PhD Professor of Biological Engineering MIT Brooke Eby Partnerships @ Salesforce | ALS fighter Collin Hovinga VP Rare and Orphan Diseases,(CP-RND), (RDCA-DAP) C-PATH Steve Kowalski pALS Natalia Luchkina Research Lead EverythingALS Esteban Roitberg Senior Data Scientist EverythingALS Gayle Wittenberg VP, Neuroscience Data Science and Digital Health Janssen R&D Agenda Attendees BIOS

Co-hosted by: AI Innovation Summit July 26th & 27th, 2026 We are excited to welcome you to our fourth annual Summit, building on our Digital Endpoints and Biomarkers Summits and expanding this year’s focus to AI innovation. Agenda Attendees Location Agenda Bristol Myers Squibb - 250 Water St, East Cambridge, MA 02141 View Agenda View Agenda Attendees and Speakers Anchor 7 Keynote Speaker Russell Andrews Actor, Director, Producer & Author Founder, StageWalkers RUSSELL ANDREWS is an accomplished author, award winning actor, director, producer and the founder of the multi-award winning, LA stage company, StageWalkers. For the stage, Russell includes being chosen by Pulitzer Prize© winning author, August Wilson, to originate the roles of ‘Mister’ in KING HEDLEY II and ‘Youngblood’ in JITNEY. With StageWalkers, he garnered actor/producer honors from the NAACP© and LA Ovation© Awards for Wilson’s PIANO LESSON, JITNEY and MA’ RAINEY’S BLACK BOTTOM, receiving his first NAACP© Theatre Award for Best Actor. In JITNEY’s London cast, Russell, along with Wilson and the American ensemble, received the UK’s Olivier Award© for Best New Play, performed at London’s Royal National Theatre. Mr. Andrews’ Film and TV credits include BETTER CALL SAUL, NCIS: New Orleans, HBO’s INSECURE, and TVOne’s RUNAWAY ISLAND, where his role as Rev. Clinton Hines earned him Emmy© Award consideration. As a newly diagnosed person living with ALS, Russell, a native of Houston, TX has become an advocate and ambassador with the ALS Network. He’s an avid volunteer with multiple local and national charitable organizations, and lives with family in Los Angeles, CA. Scientific Director - Digital Biomarkers Joel Schwartz, Ph.D Bristol Myers Squibb Joel Schwartz serves as Scientific Director of Digital Biomarkers in the Neuroscience Translational Research Center (TRC) within Research & Early Development (R&ED). He leads the strategy for identifying, developing, and validating digital biomarkers to support neuroscience drug discovery and clinical trials. With a strong foundation in neuroscience and biotech innovation, Joel collaborates across multidisciplinary teams—including data science, clinical operations, and regulatory—to translate digital measures into reliable endpoints. Prior to his current role, Joel held various positions at Biogen and Pfizer, where he drove the adoption of novel digital tools to advance precision medicine in neurodegenerative diseases. Jason Osik, Ph.D Associate Director, Digital Health Bristol Myers Squibb Jason Osik is Associate Director of Digital Health at Bristol Myers Squibb, where he leads the development of digital biomarkers and advanced data analytics to support clinical trials and therapeutic innovation. He holds a Ph.D. in Neuroscience from Brandeis University and brings over eight years of experience spanning neuroscience research, machine learning, and biopharma. Prior to BMS, he held data science roles at Biogen and Boston Scientific, focusing on predictive models in neurology. Jason’s work integrates real-world digital health data and AI to improve patient outcomes and enable smarter, more precise drug development in complex diseases. James Palmer, Ph.D. Senior Director, Neuroscience Compound Development Johnson & Johnson James Palmer, PhD, is Senior Director and Compound Development Team Leader for Neuroscience at Janssen Pharmaceutical Companies of Johnson & Johnson, based in San Diego, California. With more than 14 years in neuroscience drug development, he has led teams through the discovery, preclinical, and clinical stages of novel therapeutics. His background spans clinical program management, drug discovery, molecular biology, cell culture, protein expression, and GLP compliance, with particular expertise in translating basic neuroscience research into viable candidates for neurodegenerative and neurologic disorders. Fiona Elwood, Ph.D Vice-President, Disease Area Lead, Neurodegeneration Johnson & Johnson Fiona Elwood is vice president and neurodegeneration disease area leader at Janssen Research & Development, LLC. With her experience in neuroscience and neurodegenerative R&D, she brings deep expertise in molecular mechanisms of neurodegeneration, including in tau biology, and the use of human cell models and advanced screening approaches to support novel target identification and validation. Prior to working at Janssen, Elwood was interim global head of neuroscience and head of neurodegeneration at Novartis Institute for Biomedical Research. She received her doctorate in neuroscience from the University of London and completed her postdoctoral work in neuroscience at Stanford University. Jennifer Payne Parrish , PhD Director, Clinical Science Group Leader, Neuroscience Johnson and Johnson Innovative Medicine Jennifer Payne Parrish, PhD, is a scientific strategist with expertise spanning medical affairs and commercial planning and new product development. Among her career accomplishments is the launch and Phase IV development of Aricept (Donepezil), and she has influenced the clinical development of new CNS assets to optimize commercial success and patient value. She is known for engaging teams across all functions of the pharma organization, assessing data to deliver innovative, effective product plans that maximize the value of both pipeline and branded agents. Expertise: Phase IIIB–IV Drug Development, Medical Strategy & Affairs, Global Marketing, Pipeline Planning, Market Assessment, Publication Strategy, Life Cycle Planning, Asset Differentiation. Fernando Vieira, MD Chief Executive Officer & CSO ALS Therapy Development Institute Fernando Vieira is the Chief Executive Officer and Chief Scientific Officer of the ALS Therapy Development Institute (ALS TDI), a nonprofit biotech committed to discovering and advancing effective treatments for ALS. A physician-scientist trained at Harvard Medical School with a background in Biological Engineering from the University of Florida, Dr. Vieira has dedicated his career to ALS research since 2001. He has led efforts in preclinical drug discovery, biomarker development, and the optimization of ALS disease models. Under his leadership, ALS TDI has moved multiple therapies into clinical trials and pioneered innovative approaches to ALS drug development. Yawar Shah Akhtar , MBA Brand Lead, Rare Disease ALS Qalsody Biogen Yawar Shah Akhtar, MBA, is a marketing professional with 15 years of cross-industry experience across top pharma, FMCG/CPG, and strategy consulting firms. In recent years, he has focused on oncology, with particular expertise in radiopharmaceuticals (RLT), spanning clinical trial program and drug lifecycle management, commercial opportunity evaluation, and strategic launch planning from Phase 3 through launch. He has collaborated closely with KOLs, physician groups, and cross-functional teams across biostatistics, medical, value and access, and regulatory on numerous clinical trial programs, with experience spanning country, regional, and global roles in both developed and growth markets. Focus areas: Oncology & Radiopharmaceuticals (RLT), Clinical Trial & Lifecycle Management, Commercial Strategy & Launch Planning, Global Market Access. Kate Imhoff, MS Head of Regulatory Affairs Celosia Therapeutics Kate Imhoff has over 20 years of experience across the pharmaceutical industry, including 15+ years in Regulatory Affairs spanning global markets, quality systems, manufacturing, and R&D. She currently serves as VP of Regulatory Affairs at Abeona Therapeutics, where she leads U.S. regulatory strategy for two AAV gene therapy products and co-leads the gene-corrected cell therapy program that achieved FDA approval for ZEVASKYN in April 2025 — the treatment for recessive dystrophic epidermolysis bullosa. In prior Global Regulatory Lead roles at gene therapy and rare disease companies, she directed regulatory strategy across the US, EMEA, Japan, Canada, LATAM, and APAC from development through post-market, presenting to regulatory authorities worldwide and serving as Clinical Trial Regulatory Lead across multiple international trials. Focus areas: Gene Therapy Regulatory Strategy, Global Regulatory Affairs, FDA/EMEA/APAC Submissions, Rare Disease Product Development. Anchor 3 Richie Kahn, MPH Co-Founder & COO Canary Advisors Health Policy Advisory Richie Kahn is a health policy professional by training, clinical researcher by trade, and patient advocate by necessity, having spent the last 15 years working across the industry to reduce the time it takes to bring promising new treatments to the patients who need them most. As Co-Founder and COO of Canary Advisors, he partners with biopharma, nonprofit, and regulatory stakeholders to better align clinical development programs with patient wants and needs. Focus areas: Health Policy, Clinical Research, Patient Advocacy, Clinical Development Strategy. Brian Winger, Ph.D Associate Vice-President, Digital Health Eli Lilly & Company Brian Winger is currently a Sr. Advisor of Translational Technology & Innovation (TT&I) in Eli Lilly & Company’s Digital Health Office. He has a Ph.D. in Analytical Chemistry with more than 7 years of experience developing high resolution mass spectrometric instrumentation for life science applications as well as 20+ years of experience supporting the discovery and development of novel pharmaceutics while at Lilly. In the TT&I group, Brian has responsibility for identifying, developing and validating digital biomarkers to enable the establishment of relevant digital-based novel endpoints in support of Lilly’s medicine development portfolio. Guofa Shou, Ph.D Digital Health R&D Leader Eli Lilly & Company Guofa Shou is a digital health R&D leader with over 15 years of experience in physiological signal research. At Eli Lilly, he leads efforts to develop, validate, and implement novel digital health technologies (DHTs) that enhance traditional clinical outcome assessments across multiple therapeutic areas, including cardiometabolic, neurodegenerative disorders, oncology, immunology, and obstructive sleep apnea (OSA). His work focuses on integrating DHTs with specific digital biomarkers into clinical trials to enable precise, objective, and scalable health measurements, with a particular interest in advancing digital biomarkers that yield meaningful insights into patient experiences for drug development. Ann Marie Hake, MD Executive Director, Medical - Digital Health Eli Lilly & Company Ann Marie Hake is a board-certified Neurologist with fellowship training in neurodegenerative diseases and postgraduate training in medical informatics. In her current role at Lilly, she is a clinical research physician in the Digital Health R&D group, as well as the Vice Chair of the Lilly Bioethics Advisory Committee. Previously at Lilly she led late and early-phase clinical trials and provided medical leadership in Medical Affairs in neurodegeneration and in migraine. Prior to joining Lilly, she was an Associate Professor of Clinical Neurology at the Indiana University School of Medicine, where she continues on the adjunct faculty, serves on the Institutional Review Board, and sees neurology outpatients twice monthly. Oeystein Roed Brekk, Ph.D Senior Advisor Eli Lily Oeystein Roed Brekk is a senior neuroscientist and Senior Advisor at Eli Lilly and Company in Boston, Massachusetts, with over a decade of experience in neuroscience research, particularly in vitro and in vivo disease modeling, gene therapy vector development, and characterization of novel disease mechanisms in central nervous system disorders. His career spans roles at Takeda, Harvard Medical School, and McLean Hospital's Neuroregeneration Research Labs, with research focused on Parkinson's disease, lysosomal storage disorders, and related synucleinopathies — including alpha-synuclein biology, chaperone-mediated autophagy, and lipid metabolism's role in neurodegeneration. He holds a PhD in Neurobiology and Neurosciences from the University of Crete and an MSc in Neuroscience from the Norwegian University of Science and Technology. Focus areas: Parkinson's Disease, Synucleinopathies, Gene Therapy Vector Development, Disease Modeling, Chaperone-Mediated Autophagy, CNS Disorder. Or Eisenberg Chief Financial Officer at NeuroSense Therapeutics Neurosense Therapeutics Or Eisenberg is Chief Financial Officer at NeuroSense Therapeutics, a clinical-stage biotechnology company developing treatments for neurodegenerative diseases, including ALS, Alzheimer's, and Parkinson's disease. A registered CPA, Eisenberg brings broad experience across public companies in both Israel and the U.S. Before joining NeuroSense, he held several financial leadership roles in the biotech sector, including CFO and acting CEO of Wize Pharma. Earlier in his career, he served as controller of the Katzir Fund Group and worked as an external CFO for a number of Tel Aviv Stock Exchange–listed companies. He began his career as an accountant at Ernst & Young and holds a B.A. in Economics and Accounting from the University of Haifa. Randy Hand,Ph.D Director of Neuroscience Preclinical & Translational Research | CNS · Rare Disease Prilenia Therapeutics Randal Hand is a cellular and molecular neuroscientist with over 15 years of experience spanning academia and the biopharmaceutical industry, including roles at Apic Bio (whose lead program was acquired by uniQure) and Prilenia Therapeutics, developing pipelines for CNS disorders including Huntington's disease, ALS, and neurodevelopmental disorders. He has led the scientific, operational, and strategic build-out of preclinical functions for startup therapeutic companies, directing nonclinical research teams and managing academic partners and external vendors on programs that advanced through IND approval and into clinical trials. Focus areas: Preclinical & Nonclinical Research, Biomarker Identification, CNS Disorders, Huntington's Disease, ALS, Regulatory & Medical Affairs Support, Business Development & IP Strategy. Nil Confer, Ph.D Executive Medical Director Neurodegenerative Diseases Prilenia Therapeutics Nil Confer is a Medical Affairs professional with 20 years of experience in the pharmaceutical and biotech industry, including five years at the VP level. He has a proven track record of aligning Medical and Patient Affairs functions with regulatory, clinical, marketing, and commercial teams, bringing strong organizational and communication skills to building, leading, and cultivating high-performing, collaborative teams. His achievements include tripling referral and diagnosis volumes in just three months for an ultra-rare disease program, and building and leading a global team from pre-launch through market approval across the US, EU, and Ex-US regions. He has also proposed and helped design two FDA-approved novel comparative studies. Alexander Reilly-Jones Co-Founder & Chief Operations Officer The Process Play Alex Reilly-Jones is a passionate and versatile leader with over ten years of consultancy experience, helping organizations realize the full transformational potential of implementing ServiceNow. As Chief Operations Officer at The Process Play, she oversees the delivery of high-quality, innovative solutions that enable clients to achieve their strategic and operational goals. She also serves as ServiceNow Legal Service Delivery Product Manager at Booking.com, managing the platform's development and implementation for the legal department. Focus areas: ServiceNow Implementation, Consultancy Leadership, Legal Service Delivery, Operations Management. Kyle Gillan Lead Business Consultant, Service Now The Process Play Kyle Gillan is a Business Operations and Technology professional specializing in strategy and project management and delivery. Their experience spans cybersecurity, including vulnerability response and security incident response, having overseen more than 200 individuals in remediation efforts as a Process and Product Manager. Kyle brings strong analytical and problem-solving skills built from years of corporate consulting and professional services, including supporting the 500% growth of a Canadian veterinary consolidator (140+ hospitals). They are ITIL v4 certified and a Certified ServiceNow System Administrator, with six years of project delivery experience and one year of technical development. Focus areas: ServiceNow, Cybersecurity (Vulnerability & Incident Response), Project Delivery, Business Operations Strategy. David Hopkins Senior Director Community Investments Hop On A Cure, Foundation David Hopkins, MFA, is Vice President of Community Investments at Hop On A Cure, a nonprofit dedicated to supporting research to prevent, reverse, and cure ALS while raising awareness and building a compassionate community. He is the brother of John Driskell "Hop" Hopkins — a founding member of Zac Brown Band and founder of Hop On A Cure — who was diagnosed with ALS in 2021.Focus areas: ALS Research & Advocacy, Community Investment, Nonprofit Leadership. Kasper Roet, Ph.D Founder, Chief Executive Officer QurAlis Corporation Founder, Chief Executive Officer, Kasper Roet, PhD, is CEO and co-founder of QurAlis Corporation. He is also co-founder and serves on the board of directors of EnClear Therapies. Kasper is a passionate neuroscientist and therapy developer who specializes in gene therapies and stem cell technology-based precision medicine solutions for amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases. Kasper’s work at the Netherlands Brain Bank emphasized the need for effective treatments for patients and their families. Upon seeing the incredible achievements in stem cell modeling and gene discoveries in ALS, Kasper realized that this is the time to make a real difference for patients. He decided to move to Boston from the Netherlands with his wife, and work with two visionary leaders in ALS stem cell disease modeling, Harvard professors Clifford Woolf and Kevin Eggan with whom he co-founded QurAlis to bring breakthrough precision therapies for ALS and other neurodegenerative diseases. Kasper was trained by industry thought leaders at Johnson & Johnson along with forward-thinking scientific and business thought leaders at Harvard University. Kasper obtained his PhD degree at the Netherlands Institute for Neuroscience and the Free University of Amsterdam and obtained a master’s degree with honors from the University of Amsterdam. Kasper was awarded the Milton Safenowitz postdoctoral fellowship from the ALS Association. With QurAlis, Kasper won two Golden Tickets (Amgen 2017 and Pfizer 2018), became a JLabs member in 2018, won the Fierce15 Biotech award in 2020, and was awarded the 2022 Henri Termeer Transatlantic Connections Award. Brian Radecki Co‑Founder, Chief Executive Officer Rapa Therapeutics Brian Radecki is the Founder and CEO of Rapa Therapeutics, a clinical-stage biotech company developing T Stem Cell therapies for cancer, ALS and other neurodegenerative diseases. Motivated by personal losses to these diseases, Brian co-founded Rapa with Dr. Daniel Fowler, spinning the company out of the National Cancer Institute in 2017 and starting it from his kitchen table, eventually building it into a full-scale R&D and GMP manufacturing operation. Prior to Rapa, Brian spent nearly two decades at CoStar Group, playing a pivotal role in its transformation from a pre-IPO start-up to a multi-billion-dollar public company. With 30 years of experience across industries, Brian is also an active angel investor, board member, and advisor to private and public companies. Daniel Fowler, MD Co-Founder, Chief Medical Officer Rapa Therapeutics Dan Fowler is the founding Chief Medical Officer and Chief Scientific Officer of Rapa Therapeutics, where he leads the development of next‑generation RAPA‑T cell therapies for refractory cancers and ALS. At the National Cancer Institute (NIH), Dr. Fowler pioneered seminal research on regulatory T cells (Tregs) and Th2 cells, demonstrating their potential to modulate harmful immune responses in autoimmune and neurodegenerative diseases. His team developed RAPA‑501 hybrid T Stem TREG/Th2 cells, showing feasibility, safety, and biological activity in ALS patients. Building on Phase 1 trial success, Rapa Therapeutics is advancing Phase 2/3 and expanded access studies. Dr. Fowler is an NCI award‑winning immunotherapy leader. 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. Nader Naghavi Digital Measurements Strategy Lead | Digital Health | Digital Endpoints Regeneron Pharmaceuticals Nader Naghavi specializes in the development, validation, and implementation of sensor-based Digital Health Technologies (sDHTs) for use in clinical development programs, with [X years] of experience in the field. His work focuses on fit-for-purpose digital outcome measure strategies, including analytical and clinical validation, usability assessment, and operational feasibility of wearable and remote monitoring technologies across both clinical and free-living environments. He has designed and executed studies supporting the development of clinically meaningful digital measures aligned with disease pathophysiology and patient function. Previously, his work included the development of closed-loop and real-time digital intervention systems, integrating multimodal physiological sensing, predictive analytics, and mobile health technologies to support symptom monitoring and personalized interventions. Stephen Ruhmel Director Clinical Strategy Lead For Digital Endpoints Sanofi Stephen Ruhmel works at the intersection of digital health, clinical innovation, and technology at Sanofi, focusing on the identification, creation, validation, and operationalization of both fit-for-purpose and novel digital endpoints in clinical studies. His scope spans Dermatology, Neurological Movement Disorders, Diabetes, and Organ Transplant, across both early- and late-phase trials. Irina Antonijevic, MD, Ph.D Chief Medical Officer, Trace Neuroscience Dr. Irina Antonijevic serves as Chief Medical Officer at Trace Neuroscience, bringing over 30 years of experience in psychiatry, neurology, academia, and drug development. She previously served as CMO at EveryONE Medicines, leading a platform for individualized therapies targeting rare neurogenetic mutations, and at Triplet Therapeutics, advancing treatments for DNA repeat expansion disorders. Earlier, she held senior clinical and scientific roles at Wave Life Sciences, vasopharm GmbH, Sanofi Genzyme, Lundbeck, and Schering AG. A board-certified physician, she trained at the Max Planck Institute of Psychiatry and earned her M.D. and a Ph.D. from the University of Edinburgh. Jim Scibetta, MBA Chief Executive Officer VectorY Therapeutics Jim Scibetta has over 20 years of executive leadership experience building early-stage biotech companies into mature organizations. He served as CEO of Maverick Therapeutics through its 2021 acquisition by Takeda, President of Pacira BioSciences during its growth into a $2B+ public company, and CFO of BioEnvision through its sale to Genzyme, prior to his current role as CEO of VectorY Therapeutics. He previously spent 13 years in healthcare investment banking and holds an MBA from the University of Michigan. Focus areas: Executive Leadership, Company Building, M&A & Public Offerings, Board Governance. Ilan McNamara, Ph.D Vice-President, Regulatory Affairs VectorY Therapeutics Ilan McNamara is Vice President of Global Regulatory Affairs at VectorY, where he leads regulatory strategy for the company’s programs. With a strong background in neuroscience, molecular biology, and regulatory science, Ilan has extensive experience guiding early and late-stage therapies through clinical development. Prior to joining Vectory, he held senior regulatory roles at Prevail Therapeutics and contributed to AAV-based therapeutic development targeting neurodegenerative diseases. Ilan is known for his expertise in regulatory submissions, global agency engagement, and platform manufacturing transitions. He is passionate about advancing safe, effective therapies for patients through science-driven regulatory innovation. Suma Babu, MD Physician Scientist, Neurologist Associate Professor of Neurology Harvard Medical School- Massachusetts General Hospital Dr. Suma Babu is an Associate Professor of Neurology at Harvard Medical School and Co-Director of the Neurological Research Institute at Massachusetts General Brigham. Her research centers on improving outcomes for people with ALS, with a special interest in early-phase clinical trials and gene-targeted trials, funded by the NIH, PCORI, industry, and foundations. She serves as PI of the Healey ALS MyMatch Program, launched in 2025 — a series of patient-centric, multi-site Phase 1b/2a biomarker-driven clinical trials — and leads the neuroimaging research program for ALS at Mass General Hospital, co-chairing the NEALS neuroimaging subcommittee. Focus areas: ALS & Neuromuscular Disease, Early-Phase Clinical Trials, Gene-Targeted Therapies, Neuroimaging Research. 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. Anchor 2 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’s Department of Biological Engineering and Associate Member of the Broad Institute. He directs the Fraenkel Lab, which integrates computational and experimental systems‐biology to discover new therapeutic strategies for diseases such as 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 at MIT. His work focuses on reconstructing molecular signaling pathways from multi-omics datasets to identify regulatory mechanisms and potential drug targets. Lyle W. Ostrow, MD, Ph.D Associate Professor, Neurology, Lewis Katz School of Medicine Temple University Lyle Ostrow is a neurologist, ALS and muscle disorder researcher, and Director of the Temple Neuromuscular Pathology Lab and the Temple ALS Postmortem Core & Guamanian ALS-PDC Resources. He serves on the Scientific Advisory Boards for Everything ALS and the ALS Network, and the Board of Directors of the ALS Hope Foundation. Dr. Ostrow is the longstanding Chair of the Programmatic Panel for the Department of Defense ALS Research Program (ALSRP), the largest dedicated annual funder ($40M/year) of ALS therapeutic discovery and validation. He led ALSRP efforts to develop and refine funding mechanisms to support the development of new innovative therapeutic ideas, emphasize biomarker development, and encourage open data and resource sharing. He has ALS research grant funding from NIH, serves on several ALS steering committees and review panels, and is widely recognized for his clinical leadership, translational research, and commitment to improving care and accelerating therapies for ALS. Anchor 1 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 and clinical trials, she co-founded the Northeast ALS Consortium (NEALS) and leads the HEALEY ALS Platform Trial to accelerate therapy development. Dr. Cudkowicz has pioneered innovations like antisense oligonucleotide treatments and adaptive trial designs. She holds degrees from MIT and Harvard Medical School, and has received numerous awards including the American Academy of Neurology’s Sheila Essay ALS Award and the Forbes Norris Award. Terry D. Heiman‑Patterson, MD Professor of Neurology Temple University Terry Heiman-Patterson is Professor of Neurology at Temple University and Director of its Center for Neurodegenerative Diseases and the MDA/ALS Center of Hope. She has led over 30 ALS clinical trials, focusing on extending survival, improving quality of life, and advancing respiratory and assistive technologies. Her lab research explores genetic modifiers in murine ALS models for human translation. Co-founder and president of the ALS Hope Foundation, she has co-chaired the Northeast ALS Consortium and served on multiple grant review panels. Committed to patient care and education, she trains ALS patients as research advocates and is a member of major neurology associations. Eduardo R. Locatelli, MD, MPH Physician Executive Director & Neurologist Director, Cathy J. Husman ALS Center NSU Neuroscience Institute Eduardo R. Locatelli leads the NSU Neuroscience Institute as Physician Executive Director and directs the Cathy J. Husman ALS Center of Excellence at NSU Health in Florida. With over three decades as a U.S.licensed physician and researcher, holding an MD, MPH, Neurology Board Certification, and Neuroimaging Diplomate, Dr. Locatelli focuses on transforming patient care through leadership, strategic planning, and stakeholder engagement. Key accomplishments include establishing a multidisciplinary ALS clinic with Mass General Hospital and securing over $10 million in philanthropy to develop the Cathy J. Husman ALS Center. Dr. Locatelli has also led initiatives in medical informatics, quality improvement, and ethics to advance ALS care. Jinsy Andrews, MD, MSc, FAAN, FANA Professor of Neurology, Director, ALS Center, Director of Clinical Trials NYU Grossman School of Medicine Dr. Jinsy Andrews is a neurologist in New York, New York, affiliated with multiple hospitals in the area, including New York-Presbyterian Hospital-Columbia and Cornell and NYU Langone Hospitals . She received her medical degree from Albany Medical College and has been in practice for more than 20 years. She is an experienced Clinical Research Director with expertise in neurology and neuromuscular diseases, particularly amyotrophic lateral sclerosis (ALS), as well as Alzheimer's disease. She currently serves as co-chair of the Northeastern ALS Consortium (NEALS), and is skilled in clinical trial design, outcomes development, biotechnology, and good clinical practice. Sabrina Paganoni, M.D, Ph.D Physician-Scientist & Assistant Professor Healey Center for ALS, Massachusetts General Hospital & Spaulding Rehabilitation Hospital Dr. Sabrina Paganoni is an Assistant Professor at Harvard Medical School and a physician-scientist at the Healey Center for ALS at Massachusetts General Hospital and Spaulding Rehabilitation Hospital. Her research focuses on developing new ALS treatments through innovative trial designs, digital technologies, and novel clinical endpoints. She is co-PI of the HEALEY ALS Platform Trial, the world’s first platform trial for ALS, and has led major studies including CENTAUR and the global PHOENIX trial. Dr. Paganoni also advances research in Primary Lateral Sclerosis, Hereditary Spastic Paraplegia, and assistive technologies for people with motor neuron diseases. She has published more than 100 peer-reviewed papers and has received numerous national awards for her contributions to clinical research. James Gorman, M.D., Ph.D Senior Director of Translational R&D Principal Investigator, Brain Targeting Program James Gorman, M.D., Ph.D., is Senior Director of Translational R&D and Principal Investigator of the Brain Targeting Program at the Wyss Institute for Biologically Inspired Engineering at Harvard University. He leads the development of innovative technologies to deliver therapeutics across the blood-brain barrier, advancing treatments for neurological diseases through broad collaborations with academia, industry, and nonprofit partners. Before joining the Wyss Institute, Jim held leadership roles at Abbott Laboratories, where he helped shape antibody discovery and translational R&D, and later co-founded two biotechnology companies. He earned his M.D. and Ph.D. from Harvard Medical School and graduated summa cum laude from Yale University. Sayan Bhandari High School Student & ALS Research Advocate Founder, PRISM (Personalized Research Into Sporadic Mechanisms) Sayan Bhandari is a high school student passionate about artificial intelligence, computational biology, and precision medicine. Inspired by his mother’s diagnosis of ALS, he is focused on advancing understanding and treatment of sporadic ALS. His primary project, PRISM (Personalized Research Into Sporadic Mechanisms), explores the idea that sporadic ALS consists of biologically distinct subtypes. By integrating longitudinal multi-omic data with AI models, PRISM aims to identify these subtypes, map disease progression, and enable more personalized therapeutic approaches. In parallel, Sayan is developing a customizable longitudinal data platform to help patients track health metrics over time, supporting both individual care and future research. Outside of science, Sayan enjoys traveling with his family and exploring different cultures. These experiences inspired his book A World of Festivals, with a portion of proceeds supporting ALS research. Shalini Gupta, MD Dermatologist & ALS Patient Advocate Harvard-Trained Dermatologist, Cosmetic Dermatology Dr. Shalini Gupta is a Harvard-trained dermatologist specializing in cosmetic dermatology. She completed surgical training at Brown University, a photomedicine fellowship at NYU Medical Center, and her dermatology residency at the University of Washington before establishing her practice in Cincinnati. Her work also draws on her study of anti-aging and Ayurvedic medicine. Dr. Gupta spent much of her childhood in Brazil and Germany and is fluent in German and speaks Hindi. Outside medicine, she enjoys traveling, painting, dancing, and spending time with her family. In September 2024, she was diagnosed with limb-onset ALS. As the disease has increasingly affected her mobility and independence, she has dedicated herself to learning about emerging ALS research, exploring potential therapies, and advocating for greater innovation. As both a physician and a person living with ALS, she hopes to advance understanding of the disease and improve the lives of those affected. Jennifer Morganroth, MD, MBA Attending Neurologist, ALS & Neuromuscular Disorders Massachusetts General Hospital Jennifer Morganroth, MD, MBA, is a clinical investigator at the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and an Instructor at Harvard Medical School. Her work focuses on clinical trial innovation and using artificial intelligence to improve trial screening, access, and integration into clinical care. She also devolved the Clinic for Motor Neuron Health, a program for individuals at genetic risk for ALS focused on early detection, monitoring, and research. Yentli Soto Albrecht , PhD MD-PhD Candidate Genetics ALS & FTD Co-founder CureC9 UPenn School of Medicine Yentli Soto Albrecht is an MD-PhD student at the University of Pennsylvania who brings a unique perspective to the ALS community as a scientist, physician-in-training, and C9orf72 expansion carrier. After losing her father to rapidly progressive familial ALS in 2024, she redirected her work toward neurodegeneration research, driven to help accelerate progress toward prevention and meaningful treatments for individuals and families facing ALS and FTD. She is committed to pursuing this goal across academia and industry, combining science, medicine, and advocacy, and is equally passionate about supporting others entering the physician-scientist pathway through mentorship and community-building. Focus areas: ALS & FTD Neurodegeneration, Physician-Scientist Training, Genetic Risk (C9orf72), Advocacy, Mentorship & Community Building. Angela Genge, MD Chief Medical Officer ALS- Pharma Dr. Angela Genge is a renowned neurologist and global leader in clinical research for rare neurological diseases. Since 1998, she has directed the ALS Clinic at The Neuro (Montreal Neurological Institute-Hospital), and in 2014 became Executive Director of the ALS Global Center of Excellence in Patient Care. She led The Neuro's Clinical Research Unit from 2004 to 2023, building it into one of Canada's largest neurological research hubs, including a Phase 1 Unit dedicated exclusively to neurological diseases. She now serves as Director of the Center for Innovative Medicine and Director of Clinical Research at the MUHC Research Institute, continues to lead the McGill ALS Center of Excellence, and launched ACCESS ALS, a Canadian Phase 1 ALS clinical trial network. Her trial leadership spans ALS, dementias, myopathies, neuropathies, myasthenia gravis, and pain, with expertise in trial design, drug development, regulatory affairs, and real-world evidence programs. Focus areas: Rare Neurological Diseases, ALS Clinical Trials, Clinical Trial Design & Drug Development, Regulatory & Medical Affairs. Charmaine DeManuele, Ph.D Vice President and Head of R&D Data, Data Science & AI - Neuroscience Johnson & Johnson Charmaine Demanuele, PhD, is Vice President and Head of R&D Data, Data Science & AI for Neuroscience at Johnson & Johnson Innovative Medicine. She leads efforts to transform neuroscience drug discovery and development by integrating multi-omics, digital endpoints and real-world evidence, applying AI and advanced statistical methods to deepen our understanding of disease biology and improve patient outcomes. Previously, Charmaine was Executive Director and Head of Quantitative Sciences for Digital Medicine & Translational Imaging at Pfizer, where she advanced patient-centric clinical trials and novel digital endpoints across therapeutic areas. She holds a PhD in Neuroscience and completed postdoctoral training in psychiatric neuroimaging at Harvard Medical School and the Bernstein Center for Computational Neuroscience Heidelberg-Mannheim. A recognized thought leader, she actively drives cross-industry adoption of AI and digital health through global consortia, academic collaborations and regulatory initiatives. Dawn Barnes Commercial Head for Neurology Rare Disease Otsuka Pharmaceuticals Dawn Barnes is the Commercial Head for Neurology Rare Disease at Otsuka Pharmaceuticals. She has led the launch of innovative therapies across multiple therapeutic areas, helping bring new treatment options to people living with rare and serious diseases. Dawn is passionate about advancing patient-centered solutions and partnering with the rare disease community to improve outcomes for patients and their families. Lida Zeinali, MD Medical Director, Global Strategy Lead for ALS Otsuka Pharmaceutical Lida Zeinali, MD is Medical Director, Global Strategy Lead for ALS at Otsuka Pharmaceutical. A physician by training, she has extensive experience spanning clinical medicine, global medical strategy, and rare diseases. Lida is passionate about partnering with people living with ALS, caregivers, clinicians, researchers, and advocates to help translate scientific innovation into therapies that meaningfully improve patients’ lives. She believes that the best advances happen when science is guided by the voices and experiences of the ALS community Karen King SVP of Program Management and Clinical Operations Coya Therapeutics Karen has over 25 years of experience in the biopharmaceutical industry, specializing in clinical trials for rare and neurodegenerative diseases. As SVP of Program Management and Clinical Operations at Coya Therapeutics , Karen plays a significant role in driving the clinical development of potentially transformative therapies in ALS, FTD, and other neurodegenerative diseases. She is passionate about finding cures for rare diseases and improving clinical outcomes for patients and their families. Her dedication extends to her volunteer work with the nonprofit Genetic ALS and FTD: End the Legacy, further demonstrating her commitment to advancing treatments and cures for these challenging conditions. Ed Lein, Ph.D Executive Vice President & Director Brain Health Allen Institute for Brain Science Dr. Ed Lein leads the Brain Health accelerator's research and global collaboration efforts to advance foundational insights into the human brain and neurodegenerative disease, having previously led the Human Cell Types Department in the Brain Science accelerator. His research has focused on creating comprehensive cell atlases of the human and non-human primate brain and developing tools for precision genetic targeting of brain cell types, work now expanding across Alzheimer's, Parkinson's, Huntington's, and ALS through large-scale discovery science, AI, disease modeling, and cell- and circuit-based genetic therapies. He is a member of the BRAIN Initiative Cell Atlas Network (BICAN) and the Human Cell Atlas organizing committee, a CIFAR fellow, and an affiliate professor at the University of Washington. He holds a BS in Biochemistry from Purdue University and a PhD in Neurobiology from UC Berkeley, and completed postdoctoral work at the Salk Institute for Biological Studies. Focus areas: Developmental Neurobiology, Cellular & Structural Neuroanatomy, Transcriptomics & Epigenomics, Comparative Neurobiology, Alzheimer's Disease. Walter Koroshetz, MD Immediate Past Director National Institute of Neurological Disorders and Stroke Dr. Koroshetz served as Director of the National Institute of Neurological Disorders and Stroke 2015-2026. He joined NINDS in 2007 as Deputy Director and has held leadership roles in multiple programs including co-leading the NIH’s BRAIN Initiative, the NIH RECOVER Initiative on Post Acute Sequelae of COVID-19, Common fund somatic cell gene editing program, pain research in the Helping to End Addiction Long Term (HEAL) Initiative, the Accelerated Medicine Partnerships for Parkinson's and the Public Private Partnership in ALS. Before joining NINDS, Dr. Koroshetz served as Vice Chair of Neurology, Director of stroke and neurointensive care services at Massachusetts General Hospital (MGH) and neurologist in the MGH Huntington’s Disease Clinic. He was a professor of Neurology at Harvard Medical School (HMS) and led neurology resident training at MGH between 1990 and 2007. 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 associations on digital health and medical technology development, evaluation, and regulation. He spent 14 years at the FDA in various roles focused on medical devices, diagnostics, and digital health, most recently as the founding Deputy Director of the FDA's Digital Health Center of Excellence. Brendan contributed to hundreds of precedent-setting decisions and co-authored key policies that form the foundation of the FDA’s digital health strategy. He frequently represented the agency in public forums, congressional discussions, and media interviews, and played a significant role in the federal response to SARS-CoV-2. 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. Philip Reilly, MD, JD Co‑Founder & Director, Luna Genetics Venture Partner, Third Rock Ventures Third Rock Ventures EverythingALS Boardmember Philip Reilly is a biotech entrepreneur, physician, and attorney who serves as Co‑Founder and Director of Luna Genetics, a company developing next-generation prenatal diagnostic technologies. He is also a Venture Partner at Third Rock Ventures, where he helps launch and guide innovative life science companies. Trained in internal medicine and clinical genetics, Dr. Reilly has held leadership roles including interim Chief Medical Officer at bluebird bio and CEO of Interleukin Genetics. He is the author of seven books and over 100 scientific and policy articles, and has long been active at the intersection of genetics, medicine, ethics, and law. Susan Catalano, Ph.D Chief Scientific Officer, Biotechnology Industry Leader EverythingALS Boardmember Susan Catalano is a highly experienced biotechnology executive, serving as Chief Scientific Officer and strategic advisor to early-stage biotech ventures. She co‑founded Cognition Therapeutics in 2007 and guided its discovery, preclinical, and clinical science efforts, culminating in the development of CT1812, now in clinical trials. With more than two decades of leadership in neurobiology and oncology drug discovery, she has held executive roles at CodA Biotherapeutics, Acumen Pharmaceuticals, Rigel Pharmaceuticals, and Roche. Dr. Catalano has authored numerous publications and patents, contributed as principal investigator on NIH funded projects, and serves on scientific advisory boards in neurodegenerative drug development. Anchor 4 John Hudacek Retired U.S. Army veteran Person living with ALS EverythingALS Pathfinder John Hudacek is a retired U.S. Army veteran from Melbourne, Florida, with a 20-year career as an Infantryman, Aerial Photographer, and Special Forces Medic. After active duty, he coordinated training programs at a private military boarding school and later served as an educational advisor and officer recruiter for the Army until retiring in 2020. That same year, following a COVID-19 infection, John was diagnosed with ALS—having first noticed symptoms in 2019. He began FDA-approved treatments promptly and continues to maintain an ALSFRS-R score of 44. Committed to wellness, 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, holds a B.S. in Business Administration and an A.S. in Computer Science. After 34 years with Apple, he retired in 2020 following a long-term disability. Diagnosed with ALS in 2017, Steven quickly embraced advocacy, inspired by Pete Frates Day in Boston. He has since raised over $250K for research, participated in clinical trials, and serves on multiple ALS boards and committees. Steven is active in advocacy, research advisory roles, and technology consulting for ALS mobility. His ALS progresses slowly; he uses a cane and AFOs while staying physically active daily with the help of technology. Shawn Penno 25 years as Care Aid Person Living with ALS Shawn lives in BC, Canada, and have been a care aide for 25 years, 2 in long-term care and the rest in the Community. I was diagnosed in September '23 with limb onset ALS after 16 months of 'investigating,' with a diagnosis of carpal tunnel, thoracic outlet syndrome, and such. I WANT to do what I can while I still can! I even built my own wheelchair ramp right after my Dx while still having the arm strength to do it! Peggy Merrill Yoga teacher and studio owner Person Living with ALS My journey with Motor Neuron Disease began with difficulties speaking, and a hypersensitivity in my throat. As a yoga teacher and studio owner this was particularly challenging since I relied on my voice to share my love of all things yoga and meditation. I use AI ElevenLabs to voice clone for me, which I am using to create new yoga practices to share within the ALS/PLS/MND community. Anthony Martin Varela Firefighter & ALS Advocate City of Los Angeles Fire Department (35 years of service) My name is Anthony (Tony) Martin Varela. My better half is named Cheri and we live in Huntington Beach, California. I have two children and two grandchildren with one on the way!! I am a retired Firefighter who worked for the City of Los Angeles. I worked 35 years before Retirement. I love outdoor activities and try to get out and enjoy the fresh air as often as I can. I was diagnosed with ALS in April of 2023. After two years of wondering why I was losing weight and strength, a paramedic friend told me to see a neurologist. After doing so, I received the bad news. 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. McFinn Lovere ALS Reversal #42 Community Lead and Spiritual Guide Head of Pathfinder Program EverythingALS McFinn Lovere is a spiritual guide and ALS Reversal #42 confirmed Dr. Richard Bedlack. Diagnosed with ALS in 2006 and initially paralyzed - able to move only his head and two fingers - he defied all expectations by reversing his progression through a deep spiritual practice, resilience, and dedicated care. Today, McFinn serves as Community Lead and Head of the Pathfinder Program at EverythingALS, offering mentorship and hope to others on their ALS journey. He actively participates in research programs at institutions including Duke University and other Institutes, sharing his experience to help advance the science and understanding of ALS recovery. Indu Navar, MSCS CEO and Founder and Ph.D Researcher, King’s College London EverythingALS Indu Navar is a silicon valley tech entrepreneur. She is founder and CEO of the Peter Cohen Foundation operating as EverythingALS.org , and EverythingAD.org a nonprofit focused on technology-driven solutions and biomarker discovery for neurological diseases. After losing her husband to ALS in 2019, she dedicated her career to accelerating patient-driven research and digital health innovation. She serves on the board of Global Genes and the advisory board of Answer ALS. Indu was previously MD at Woodside Capital Partners and Founder/CEO of Serus Corporation (acquired by E2Open), with earlier roles at WebMD, Silicon Graphics, and NASA. She holds degrees in engineering and computer science and is pursuing a Ph.D. in Neuroscience at King’s College London. Christian Rubio, MBA Executive Director & Head of Development EverythingALS Christian Rubio is the Executive Director and Head of Development at EverythingALS. He brings over 15 years of leadership experience in patient advocacy, strategic partnerships, and fundraising. Prior to this role, he served as Head of Patient Advocacy at Praxis Precision Medicines and as Vice President of Strategic Advancement at Global Genes. Christian holds an MBA in Marketing and Entrepreneurship from Babson College. At EverythingALS, he leads efforts to engage patient communities, research institutions, and industry partners to drive innovation in digital biomarkers, expand clinical trial participation, and strengthen collaboration across the ALS and broader neurodegenerative disease ecosystem. Stephanie Henze Head of Design, Clinical Research Innovation & Strategy EverythingALS Stephanie Henze leads Design, Clinical Study, Research, Innovation and Strategy at EverythingALS, bringing over 30 years of global experience in rapid innovation and end-to-end development of first-to-world physical and digital medical products, customer experiences, and regulated processes. With an integrated background in medicine and industrial design, she unites user-centered design with clinical research to accelerate digital biomarker discovery and patient engagement. Stephanie has held leadership roles at McKinsey & Company, LUNAR, and Hiemstra Product Development. A graduate of Art Center College of Design, she brings deep expertise in usability, systems thinking, and real-world impact for neurodegenerative disease solutions. Natalia Luchkina, Ph.D Research & Innovation Lead EverythingALS Natalia Luchkina brings over 15 years of experience in healthcare and life sciences spanning consulting, startups, and academic research. At EverythingALS, she leads digital health research and innovation strategy for ALS and related neurodegenerative diseases. Previously, she was a consultant at McKinsey, advising healthcare, social, and public sector clients on strategy and innovation. Her expertise includes corporate strategy, data-driven solutions, and organizational transformation. With a PhD in Physiology and Neuroscience from the University of Helsinki, Natalia has conducted research at Harvard Medical School and McLean Hospital on brain networks underlying psychiatric disorders to advance drug development. Silviya Bastola Research and Operations EverythingALS Silviya Bastola holds a foundation in Neuroscience, complemented by postgraduate training in advanced sciences with expertise in project management, research methodologies, and clinical operations. With over four years of experience, she specializes in managing Phase II–IV clinical studies across biotechnology, pharmaceuticals, and medical devices, focusing on Infectious Disease, Vaccines, Rare Diseases, and Neurology (CNS). At EverythingALS, Silviya drives patient-centered innovation, advancing the care-to-cure mission for ALS through digital health tools, research and study design, and app development. Dedicated to transforming healthcare, she strives to enhance accessibility, improve patient outcomes, and accelerate progress through the fusion of biotechnology and clinical research. 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. Sachin Tehare Product Manager EverythingALS Sachin Tehare has over 17 years of experience in the IT sector, including a decade in IT-enabled industries, specializing as a Product Manager leading digital transformation initiatives across Banking, Finance, Insurance, Pharma, Healthcare, and other service industries. He combines strong analytical skills with a strategic approach to project execution, while prioritizing close collaboration with his team and fostering a culture of continuous learning. Focus areas: Digital Transformation, IT Product Management, Cross-Industry Strategy, Project Execution. Anusha Rao AI Research Engineer Neuroscience & Digital Biomarkers Student Ambassador Anusha Rao is an AI Research Engineer at Arkifi and a neuroscience researcher with a focus on digital biomarkers for neurodegenerative diseases. Her previous research includes work at the NIH and Johns Hopkins School of Medicine, where she developed machine learning models to investigate therapies for traumatic brain injury and used AlphaFold to study protein structures linked to neurodegeneration, including ALS. Anusha also contributed to the ALS Generative AI initiative at EverythingALS. With a background in large language models, cognitive science, neuroscience, and computational modeling, she combines technical expertise with a deep commitment to advancing early detection and treatment strategies for neurological disease. Julian Peller, MSc Head of Data Science Digital Biomarker Research Lead Kaggle Code Grandmaster EverythingALS Julian Peller leads EverythingALS Data Science team of seven researchers focused on discovering digital biomarkers for early diagnosis and tracking progression of ALS. With over 15 years in the software industry, Julian brings a versatile, results-driven mindset shaped by diverse roles and projects. Holding an MSc in Computer Science, Julian is a Python expert and Kaggle Code Grandmaster specializing in Deep Learning and Foundational Models. Combining strong theoretical expertise with practical innovation, Julian applies advanced machine learning, deep learning, and statistical methods to multimodal data, aiming to drive transformative progress in digital health research. Alan Taitz, Ph.D Research Scientist, AI for Speech, Health & Biosensing SRI International , EverythingALS Advisor Alan Taitz is an advanced computer scientist at SRI International with over 10 years’ experience in statistical modeling and machine learning. His interdisciplinary expertise spans physics, neuroscience, speech and language research, and AI/ML. At SRI, he has contributed to government and commercial projects and holds three pending patents. At EverythingALS, Alan Taitz advises an analytics team developing digital biomarkers for clinical trials, collaborating with pharmaceutical partners and submitting an FDA COA Letter of Intent. His PhD focused on brain language processing and speech reconstruction. He is also passionate about education, teaching physics and machine learning. Felipe Aguirre Data Scientist, Specialist in Statistics for Health Sciences EverythingALS Felipe Aguirre is a Data Scientist at EverythingALS and a PhD candidate researching applications of artificial intelligence to neurodegenerative diseases, specializing in digital biomarkers for ALS. He develops machine learning models to measure disease progression using speech, gait, respiratory, and clinical data. His work includes predicting clinical outcomes, analyzing fall risk and survival, and validating remote assessment technologies. With a background in neuroscience, psychology, statistics, and artificial intelligence, Felipe combines clinical knowledge and computational methods to advance ALS research and digital health. Anchor 5

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

Privacy Policy EverythingALS is a brand name of Peter Cohen Foundation, a non-profit, 501(c)(3) designated Washington corporation (“we”, “us”, and “our”) is committed to protecting your privacy and personal information that you provide to us when accessing or using our app or website (the “Site”). This privacy policy (this “Policy”) explains how we gather and use the information that we collect during your visit to our App. This Policy may change over time, so please be sure to reread it from time to time. Amendments, modifications or changes to this Policy will be posted at this URL and will be effective when posted. We encourage you to review the Privacy Policy each time you visit this Site, so you are aware of any updates. Your continued use of our Site following the posting of any amendment, modifications or change to this Policy shall constitute your acceptance thereof. If you do not agree with the terms in this Policy, please do not use our Site and do not provide any information to us. Authorized Users Our Site is directed to and is intended for access and use by persons of all ages and is not particularly targeted to certain age group. Personal Data Collected We gather Personal Data and Other Data (as described below). Personal data is information that identifies you or can be used to identify or contact you, e.g., your name, email address, address, or phone number (“Personal Data”). We may need to collect and process Personal Data in order to provide requested information, products or services to you (including the Site) or because we are legally required to do so. Voluntary Disclosure. We may collect Personal Data voluntarily provided by you, including in emails to the Site, online forms, order and registration forms, surveys, promotion participation, phone calls and online chats with our customer service and through other means. Other Means. We may collect information through various other means, including participation at conferences and events, individual introductions, from employers that enroll their employees in our services, and from selected third-party business partners. From time to time, we may also acquire from third parties certain lists containing the names and contact information of individuals who may be interested in our products and services. We ask that you not send us, and you not disclose, any sensitive Personal Data (e.g., social security numbers, political opinions, religion or other beliefs, heal or criminal background or trade union membership) on or through this Site or otherwise to us. Use and Disclosure o f Personal Data We will not use or share your Personal Data without a valid legal basis to do so. Any use or disclosure of Personal Data will be based on a legitimate interest. We use Personal Data for legitimate business purposes, including the following: Fulfillment of Requests. We may use Personal Data about you (a) to deliver products and services to you, (b) provide you with information about products and services you’ve enrolled in, (c) when it is necessary for employees, agents and contractors to operate or maintain the website or to correct a technical problem, and (d) when it is necessary to verify the existence or condition of your account with a other third-party. We will engage in these activities to manage our contractual relationship with you and/or to comply with a legal obligation. Other Communications. From time to time, we may use Personal Data about you to inform you of products, programs, services and promotions that we believe may be of interest to you. Other Business Purposes. We may also use Personal Data about you for other business purposes, such as data analysis (for example, to improve the efficiency of our Site and services), editorial and feedback purposes, providing customer support, customizing and improving the content and layout of the Site, completing business transactions (for example, to confirm content requested is received by users), development of marketing and promotion plans and materials, statistical analysis of user behavior (for example, to understand what parts of the Site are of most interest to users), product development, market research, administering individual accounts. We engage in these activities to manage our contractual relationship with you, to comply with a legal obligation, and/or because we have a legitimate interest. Administrative Communications. We reserve the right to use Personal Data to send to you important information regarding the Site, products, services, your account status, changes to the Site’s terms of use, this Policy, or any other policies, agreements or transactions relevant to your use of the Site, products and/or services. Because this information may be important to your use of the Site, products and/or services, you may not opt-out of receiving such communications. We will engage in this activity to manage our contractual relationship with you and/or to comply with a legal obligation. We may disclose Personal Data for the following legitimate business purposes: Third-Party Service Providers. We may provide Personal Data to third-party service providers, who provide services to us, including but not limited to, data analysis, order fulfillment, payment processing, and other services. We maintain written contracts with these third parties and require that these third parties provide at least the same level of privacy protection and security as required under this Policy. Unless we demonstrate that we are not responsible for violation of this Policy giving rise to damage, we will remain responsible and liable under Privacy Shield Principles if a third-party that we engage to process Personal Data on our behalf does so in a manner inconsistent with the Privacy Shield Principles Affiliate Communications. We may transfer Personal Data among our affiliates to allow our affiliates to contact you regarding products, programs, services and promotions that they believe may be of interest to you, and such affiliates may otherwise use your Personal Data in accordance with this Policy. If you would prefer not to receive marketing communications from us or our affiliates, please see the “opt-out” section below. EverythingALS will be the party responsible for jointly used Personal Data. Strategic Partners and Co-Branded Sites. From time to time, we may enter into a special relationship with another company that is not owned by or affiliated with us to provide or promote joint products, services, applications, or features (together, “Jointly Offered Items”). These special relationships may include co-branded web sites or apps (“co-branded pages”). Any information, including Personal Data, that you provide in connection with one of these Jointly Offered Items, and/or on one of these co-branded pages, will be shared with our third-party partners. You should check these third parties’ web sites for information regarding their privacy practices. PLEASE N OTE THAT THIS POLICY DOES NOT ADDRESS THE PRIVACY OR INFORMATION PRACTICES OF ANY THIRD PARTIES. If you do not want Personal Data about you shared with such third parties, please do not provide Personal Data in connection with the Jointly Offered Items and/or co-branded pages. Third-Party Data Providers. If you subscribe to one of our products or services that contains third-party data, we may be required to provide your Personal Data to the third party as part of our reporting obligations. We will only do so if a third-party data provider conditions your receipt of their data on knowing your identity. Conferences and Events. When you attend a conference or event organized by us, your name and contact information may be shared with other attendees. Promotions. We may share the Personal Data you provide in connection with Promotions with third-party sponsors of such Promotions (irrespective of whether such Promotions are hosted by us), or otherwise in accordance with the rules applicable to those Promotions. Assignment. We may disclose or transfer any and all Personal Data that we collect to an affiliated entity or a third party (and their respective advisors) in the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our business, assets or stock (including without limitation in connection with any bankruptcy or similar proceedings). Law Enforcement; Emergencies; Compliance. We may use and disclose Personal Data about you to others as we believe to be appropriate: (a) in compliance with laws, rules, or regulations in any country in which we operate, including laws outside your country of residence; (b) to comply with legal process; (c) if being subject to the investigatory and enforcement powers to the FTC or any other U.S. authorized statutory body and to respond to requests from government or public authorities, including government and public authorities outside your country of residence; (d) to enforce our Site’s terms of use; (e) to protect our operations or those of any affiliated entities; (f) to protect the rights, privacy, safety or property of us, our affiliated entities, you, or others; and (g) to permit us to pursue available remedies or limit the damages that we may sustain. For example, we may, to the fullest extent the law allows, disclose Personal Data about you to law enforcement agencies to assist them in identifying individuals who have been or may be engaged in unlawful activities. Such disclosures may include transfers of Personal Data from one country to another. Your Personal Data may be stored and processed in any country where we have facilities or in which we engage service providers. If you are accessing the Site from outside the United States, you may be sending information, including Personal Data to the United States where our servers are located. That information may be transferred within the United States or back out of the United States to other countries outside your country of residence. Collection and Use of Other Data We and our service providers may also collect and use the following types of data, referred to in this Policy as “Other Data”: Monitoring Data. We and our service providers may collect and/or track other information such as demographic information, domain names, computer type, browser types, screen resolution, and other statistical data involving the use of the Site (“Monitoring Data”). We use Monitoring Data to help us understand who uses the Site and to improve and market it, as well as our other web sites and services. Unless combined with Personal Data, Monitoring Data does not personally identify you or any other user, and we may use it for any purpose. Aggregated Data. We may aggregate Personal Data in a manner such that the end- product does not personally identify you or any other user of the Site, for example, by using information to calculate the percentage of our users who have a particular telephone area code. Such aggregate information may also be used for any purpose. Cookies. To enhance the Internet experience on the Site, we and our service providers may use ‘cookies’ on the Site. Cookies are data that a web server transfers to an individual’s computer for recordkeeping and other purposes. We use cookies and other technologies to facilitate users’ ongoing access to and use of our Site. If you do not want information collected through the use of cookies, there is a simple procedure in most browsers that allows you to automatically decline cookies, or to be given the choice of declining or accepting the transfer of a particular cookie, or cookies from a particular web site, to your computer. If cookies are disabled, however, all features of the Site may not operate as intended. Information about disabling cookies can be found on your Internet browser provider’s web site. The Site may have a Cookie Policy that applies to its use of cookies and other similar tracking technologies. If it does, then the Cookie Policy will apply in addition to this Policy. Tools. We and our service providers may also use various common Internet tools such as ‘pixel tags,’ ‘action tags,’ ‘web beacons,’ ‘.gif tags,’ ‘JavaScript’ or similar technologies (together, “Tools”) in connection with Site pages and email messages in certain formats to, among other things, track the actions of Site users and email recipients, to determine the success of marketing campaigns and to compile statistics about Site usage and response rates. Tools allow us to count users who have visited certain pages of the Site, to deliver services, and to help determine the effectiveness of promotional or advertising campaigns. When used in email messages in certain formats, Tools can tell the sender whether and when the email has been opened. We use cookies and Tools to understand how the Site is used and to customize and enhance the Internet experience of individual users. When you revisit the Site, we may recognize you by a Tool and customize your experience. For example, once you have completed the registration process, a cookie and/or Tool will be used to avoid having you register again. We believe cookies and Tools add value to the user experience. Google Analytics. We may use Google Analytics, which uses cookies and other similar technologies, to collect and analyze information about Site use and to report on activities and trends. The service may also collect information regarding the use of other websites, apps and online resources. You can learn about Google’s practices by going to https://policies.google.com/privacy/partners, and opt out of them by downloading the Google Analytics opt-out browser add-on, available at https://tools.google.com/dlpage/gaoptout. Verification. We may use third-party services to verify that you are a human user. Any information collected as part of such verification is subject to the privacy policy of the third-party service provider. IP Addresses. When you visit and interact with the Site, we and our third-party service providers may collect Internet Protocol (IP) addresses. Your IP address is a number that is automatically assigned to the computer that you are using by your Internet Service Provider (ISP). This number is identified and logged automatically in our server log files whenever you visit the Site, along with the time(s) of your visit(s) and the page(s) that you visited. We use IP addresses to understand how the Site is used by our users, to improve the Site and to enhance user experience of the Site. We may also use your IP address to help diagnose problems with our server and to administer our Site. We may also derive your approximate location from your IP address. Our Adve rtising We may use third-party advertising companies to serve advertisements regarding products and services that may be of interest to you when you access and use the Site, our apps and other websites or online services, based on information relating to your access to and use of the Site and other websites or online services on any of your devices, as well as on information received from third parties. To do so, these companies may place or recognize a unique cookie on your browser (including through the use of pixel tags). They may also use these technologies, along with information they collect about your online use, to recognize you across the devices you use, such as a mobile phone and a laptop. Security We may store your Personal Data. This information is retained and used in accordance with existing laws, rules, regulations, and other policies. While there is no such thing as “perfect security” on the Internet, we will take reasonable steps to ensure the safety of your Personal Data. Personal Data is stored on our server and is not publicly accessible. To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we take reasonable precautions and have security measures in place to protect the loss, misuse and alteration of the information under our control. Although we attempt to ensure the integrity and security of our network and systems, we cannot guarantee that our security measures will prevent third-party “hackers” from illegally obtaining this information. We are not responsible for any breach of its security or for the actions of any third parties that may obtain any Personal Data. You are prohibited from violating or attempting to violate security for or otherwise interfering with the operation of the website. We do not make, and expressly disclaim, any representation or warranty, express or implied, regarding the security or integrity of the website and your Personal Data. If you have reason to believe that your interaction with us is no longer secure (for example, if you feel that the security of any account you might have with us has been compromised), please notify us of the problem immediately by sending an e-mail to compliance@everythingals.org . Data Integrity; Retention Period We will use Personal Data only in ways that are compatible with the purposes for which it was collected, authorized by this Policy, or authorized by you. We will take reasonable steps to ensure that Personal Data is relevant to its intended use, and is accurate, complete, and current (as provided by you). We depend on you to update or correct your Personal Data whenever necessary. We will retain Personal Data about you for as long as needed or permitted in light of the purpose(s) for which it was obtained and consistent with applicable law. The criteria used to determine our retention periods include: (i) the length of time we have an ongoing relationship with you; (ii) whether there is a legal obligation to which we are subject; and (iii) whether retention is advisable in light of our legal position (such as in regard to applicable statutes of limitations, litigation or regulatory investigations). Choice; Opt-Out We give you choices regarding our use and disclosure of your Personal Data as follows: If you no longer want to receive marketing-related emails from us on a going- forward basis, you may stop receiving these marketing-related emails by sending an e-mail to compliance@everythingals.org . If you would prefer that we do not share your Personal Data on a going-forward basis with our affiliates or with unaffiliated third parties for their marketing purposes or for the other purposes described in this Policy, you may cease this sharing by sending an e-mail to compliance@everythingals.org . This does not apply to third parties acting as our agents and under our instruction pursuant to a written agreement. If we transfer personal data to a third party acting as an agent, we will: (i) transfer the personal data only for limited and specified purposes; (ii) ensure that the agent is obligated to provide at least the same level of privacy protection as is required by the Privacy Shield principles; (iii) take reasonable and appropriate steps to ensure that the agent effectively processes the personal data in a manner consistent with our obligations under those principles; (iv) require the agent to notify the us if it makes a determination that it can no longer meet its obligation to provide the same level of protection as is required by the principles; (v) upon notice, including under (iv), take reasonable and appropriate steps to stop and remediate unauthorized processing; and (vi) provide a summary or a representative copy of the relevant privacy provisions of its contract with that agent to the Department of Commerce upon request. If you would like to opt-out of your Personal Data being used for a purpose that is materially different from the purpose(s) for which it was originally collected or subsequently authorized by you, e-mail compliance@everythingals.org . We will try to comply with your request(s) as soon as reasonably practicable. Please note that if you exercise the second option as described above, we will not be able to remove your Personal Data from the databases of our affiliates or unaffiliated third parties with which we have already shared your Personal Data (i.e., to which we have already provided your Personal Data as of the date that we implement your request). Further, please note that requesting us not to share your Personal Data with affiliates or unaffiliated third parties may result in you no longer receiving any marketing emails from us. Please also note that if you choose not to receive marketing-related messages from us, we may still send you important administrative messages, and you cannot elect to stop receiving such administrative messages, unless you choose to stop receiving services from us. You may also indicate your choices regarding marketing-related emails by contacting us via postal mail or telephone using our contact information below, or if you have a Site profile/account, by changing your preferences on your Site profile/account at any time. Your Rights You have certain rights over your data: You have the right to be informed, which means that anyone processing your personal data must make clear what they are processing, why, and who else the data may be passed to. You have the right to request an exported file of the Personal Data we hold about you, including any data you have provided to us. You have the right to receive this data in a commonly used, machine readable format. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes. You have the right to have your data amended or corrected. The process for doing that is described later in this Policy. You have the right to restrict or object to further processing of your data You have the right to submit a complaint related to use or collection of you information. Correct; Update If you would like to request to review, correct, update, suppress, delete or otherwise limit our use of your Personal Data that has been previously provided to us, or if you would like to request to receive an electronic copy of your Personal Data for purposes of transmitting it to another company (to the extent this right to data portability is provided to you by applicable law), you may make a request by contacting us by sending an e-mail to compliance@everythingals.org . We will respond to your request consistent with applicable law. For your protection, we may only implement requests with respect to the Personal Data associated with the particular email address that you use to send us your request, and we may need to verify your identity before implementing your request. We will try to comply with your request as soon as reasonably practicable and consistent with applicable law. Please note that we may need to retain certain information for recordkeeping purposes and/or to complete any transactions that you began prior to requesting the change or deletion. There may also be residual information that will remain within our databases and other records, which will not be removed. Links The Site may contain links to other Internet web sites, including social media sites and third- party hosted collaboration tools. These linked sites are not under our control. We provide links only as a convenience, and we does not endorse or control, and is not responsible for, the privacy practices or the content of these linked sites. If you provide any Personal Data through any third-party web site, or choose to communicate with us using third-party collaboration tools or other social media platforms, your transaction will occur on that third party’s web site (not the Site) and the Personal Data you provide will be collected by, and controlled by the privacy policy of, that third party. We recommend that you familiarize yourself with the privacy policies and practices of any such third parties. PLEASE NOTE THAT THIS POLICY DOES NOT ADDRESS THE PRIVACY OR INFORMATION PRACTICES OF ANY THIRD PARTIES, INCLUDING, WITHOUT LIMITATION, AFFILIATED ENTITIES THAT DO NOT POST OR LINK DIRECTLY TO THIS POLICY. Do Not Track Disclosures We do not respond to Do Not Track (“DNT”) signals at this time. Some third-party sites may track your actions when you are browsing and accessing content. Various browsers offer a DNT option that sends a signal to third parties that you do not want to be tracked. Data Controller This Policy applies to Personal Data to the extent EverythingALS is deemed to be a Data Controller of your Personal Data. A Data Controller is a person or entity that determines the purposes and means of the processing of the Personal Data. EverythingALS may also be a Data Processor or may engage third parties to be a Data Processor of your Personal Data. Questions or requests related to your Personal Data may be submitted to compliance@everythingals.org . Cross Border Transfer of Personal Data Your Personal Data may be stored and processed in any country where we have facilities or in which we engage service providers. If you are accessing the Site from outside the United States, you may be sending information, including Personal Data to the United States where our servers are located. That information may be transferred within the United States or back out of the United States to other countries outside your country of residence. We take appropriate measures to secure your Personal Data under these circumstances in accordance with this Policy and applicable laws. By transferring information or allowing information to be transferred to us, you consent to the transfer, processing and storage in countries outside your country of residence. In certain circumstances, courts, law enforcement agencies, regulatory agencies, or security authorities in those other countries may be entitled to access your Personal Data. As further provided in this Policy, our participation in and certification of compliance with the Privacy Shield Principles forms the legal basis for transferring data from certain countries into the United States. Contact Us. If you have any questions about this Policy or the practices of our website, you can e-mail us at compliance@everythingals.org .

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. The ALS Gene Carrier Study Study of Asymptomatic Carriers We are looking for individuals who are Gene Carriers of ALS and currently Asymptomatic We are developing a study motivated by the need for monitoring and early detection of motor and speech changes using advanced computational technology . By participating in this study, you will contribute to further improve current assessment of individuals with the Asymptomatic ALS gene using physiological signals and objective measurements. Our goal is to sensitively detect early motor and speech changes in ALS using a multimodal monitoring approach. We will measure gait and balance, speech, and upper limb function using motor function sensors. This study is fully remote and can be performed in the comfort of your home. We are currently in the trial design phase. If you would like to participate in this study in the near future, please fill out the interest form below. Your connection to ALS I am interested to participate in The Speech Study to advance drug trials (All) The Radcliff : Multi-disciplinary Study (pALS Only) The ALS Gene Carrier Study (Not diagnosed) Are you enrolled in DIALS (Prevent ALS) study? * Required Yes No Don't know Do you use Assistive Devices ? For Walking For Breathing CPAP Other Cane Rollator Walker Wheelchair Other What is your shoe size? What is your t-shirt size? Women Men Country Submit

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. Everything ALS Request to Delete Account and Personal Data If you wish to delete your account and remove your personal data from our system, please follow these simple steps: Fill Out the Form: Provide the necessary details in the form. Submit the Form: Once you’ve completed the form, submit it to initiate the deletion process. Upon receiving your request, our team will promptly process it. We will permanently delete all your data from our records.Please note that this action is irreversible, and you will no longer be able to access your account or any associated data after deletion. Delete Account Form First Name Last Name Email that you used to create an Account on the App Mobile Number Reason for Account Deletion Submit

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