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EverythingALS Publications Publications 2026 MDA Poster AI-Assisted ECAS Copilot to Support Test Administration and Improve Standardization in ALS Cognitive Screening Anusha Rao, Raquel Garcia, Silviya Bastola, Lauren Gray, Indu Navar, Sharon Abrahams, Ammar Al-Chalabi, Natalia Luchkina Abstract Cognitive and behavioral impairment affects up to 50% of people with amyotrophic lateral sclerosis (ALS). The Edinburgh Cognitive and Behavioural ALS Screen (ECAS) is an ALS-specific assessment that requires real-time transcription and structured scoring, introducing potential inter-rater variability. We developed a human-in-the-loop AI copilot to support ECAS administration with live transcription and guideline-based scoring suggestions while maintaining clinician oversight. In two retrospective datasets, high variability and error rates were observed in subtests requiring transcription and semantic judgment, In contrast, AI-assisted scoring produced fully consistent results for identical responses. Our ECAS copilot may improve scoring consistency, reduce administrator burden, and support remote assessment, which participants generally preferred and which substantially lowers environmental impact. A prospective validation study is currently ongoing. READ MORE 2025 Community Perspective Critical Bottlenecks in Rare Disease Research and Care: A Community Perspective Julie McMurry, Alison Sizer, Robert Allaway, Cornelius Boerkoel, AJ Chen, Jason Colquitt, James Cummings, Autri Dutta, Nasha Fitter, Robert Green, Adam Hansen, Eric Harker, Nomi Harris, Collin Hovinga, Ari Kahn, Hans Keil, Rodger Kessler, Lukas Lange, Arturo Loaiza-Bonilla, Natalia Luchkina, Eric Luellen, Arezoo Movaghar, Tomi Pastinen, Elizabeth Rountree, Vivek Rudrapatna, Adam Sand, Katharina Schmolly, Patrick Short, Marina Sirota, Geoffrey Siwo, Nicholas Tatonetti, Natan Vidra, Farid Vij, Samuel Volchenboum, Anita Walden, Ramona L. Walls, Peter Washington, Dylan Wenzlau, Margaret Wenzlau, Matthew Wheeler, Charlene Son Rigby, Melissa Haendel Abstract This document details an impromptu community gathering following the cancellation of an ARPA-H proposer's day for the Rare Disease AI/ML for Precision Integrated Diagnostics (RAPID) program . The discussion became a powerful example of how shared commitment to improving patient outcomes can transcend institutional boundaries and administrative hurdles. This white paper synthesizes perspectives from healthcare providers, academic researchers, industry experts, registry providers, and people with lived experience to identify critical bottlenecks that must be addressed to accelerate progress in the rare disease field. READ MORE 2025 NEALS Poster Evaluating the Precision of Quantitative Voice Characteristics as Endpoints in ALS Clinical Trials Macklin EA, Kim M, Sharma S, Taitz A, Peller J, Ostrow LW, Fraenkel E, Paganoni S, Cudkowicz ME, Shefner JM, Vogel AP, Navar Bingham I, Berry JD for the HEALEY ALS Platform Trial Study Group Abstract Progressive bulbar dysfunction, including dysarthria, is a common feature of ALS. Quantitative voice characteristics have been proposed as low-burden digital biomarkers of disease progression and potential pharmacodynamic biomarkers in ALS clinical trials. We used data from the first four regimens of the HEALEY ALS Platform Trial, where participants completed structured speech recordings in clinic and at home over 24 weeks. Multiple voice metrics were derived alongside independent assessments of listener effort, naturalness, and intelligibility. Listener effort, which measures communication through speech, showed high relative precision, whether rated by speech-language pathologists or estimated using a machine-learning model. Among low-level metrics, articulatory precision and pause rate had the highest relative precision. Restricting speech recordings to only in-clinic or only at-home settings, or reducing assessment frequency, increased variance, with an inflection when sampling less frequently than every 14 days. These findings highlight the importance of selecting sensitive metrics, maintaining frequent assessments, and optimizing cohort selection to advance speech-based endpoints in ALS trials. READ MORE 2025 ASHA Presentation Hidden in Plain Sight: Unlocking the Potential of SLP Expertise for Clinical Trial Advancement Designated as Centennial Session Centennial sessions are characterized by their ability to foresee and address future challenges, shape industry practices, and lead transformative initiatives. Katie Seaver, Lyle Ostrow, Donna Harris, Kathryn Wright, Jordan Green Abstract This session highlights the critical expertise of Speech-Language Pathologists (SLPs) in unlocking the potential of perceived listener effort (LE) as a clinically meaningful outcome measure for Amyotrophic Lateral Sclerosis (ALS).  We will explore the EverythingALS Speech Study, which leverages remote speech recordings and expert SLP ratings of LE to monitor dysarthria progression. Learn how LE provides a more sensitive and holistic assessment of communication impairment compared to traditional measures of intelligibility, severity, or the ALS Functional Rating Scale-R.  Discover the reliability of SLP scoring across different datasets and the potential of LE to serve as a valuable endpoint in ALS clinical trials, emphasizing the indispensable role of SLPs in advancing research and drug development in this field. READ MORE ENCALS LEPM Poster Machine Learning Model Predicts Listener Effort in ALS-related Dysarthria Esteban G. Roitberg, Marcos A. Trevisan, Julian Peller, Diego E. Shalom, Felipe Aguirre, Gastón Bujía, Alan Taitz, Donna Harris, Katie Seaver, Stacey Sullivan, Amy Wright, Jordan R. Green, Jason Osik, Ryan A. Shewcraft, Peng Jiang, Joel Schwartz, Ernest Fraenkel, James D. Berry, Indu Navar Bingham, Lyle W. Ostrow. Background Dysarthria is associated with decreased quality of life in people with ALS. Monitoring progressive changes in speech is challenging due to the complex impact of ALS on multiple speech subsystems. Quantitative measures of dysarthria could be useful as ALS clinical trial outcome measures, providing clinically meaningful insight into the progression of bulbar symptomatology. Listener Effort (LE) is a clinician rated feature, scored from 0-100, describing how much effort a healthy listener needs to exert to understand a dysarthric speaker. Listener Effort is inherently clinically meaningful, can be reliably rated by Speech-Language Pathologists (SLPs) listening to recorded speech samples, changes quantitatively over time in ALS, and is highly reproducible. READ MORE Listener effort measures clinically meaningful change of dysarthria in amyotrophic lateral sclerosis Indu Navar Bingham, Raquel Norel, Esteban G. Roitberg, Julián Peller, Marcos A. Trevisan, Carla Agurto, Michele Merler, Diego E. Shalom, Felipe Aguirre, Iair Embon, Alan Taitz, Donna Harris, Amy Wright, Katie Seaver, Stacey Sullivan, Jordan R. Green, Lyle W. Ostrow, Ernest Fraenkel, James D. Berry Abstract Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that can cause progressive bulbar dysfunction and dysarthria, resulting in reduced quality of life. Quantitative motor speech analysis can identify features of dysarthria that worsen with ALS progression but are not, inherently, clinically meaningful. Listener effort is a clinician rated feature describing how much effort the listener needs to exert to understand the dysarthric speaker. This study investigated whether listener effort could act as a clinically meaningful measure of ALS dysarthria that could be used as an outcome measure in clinical trials. READ MORE Reliable monitoring of respiratory function with home spirometry in people living with amyotrophic lateral sclerosis Julian Peller, Marcos A. Trevisan, Gaston Bujial, Felipe Aguirrel, Diego E. Shalom, Alan TaitzIt, Stephanie Henzel, Silviya Bastola, Jason Osik, Ryan A. Shewcraft, Peng Jiang, Joel Schwartz, Terry Heiman-Patterson, Michael E. ShermanS, Matthew F. Wipperman, Oren Levy, Guofa Shou, Karl A. Sillay, Lyle W. Ostrow, Ernest Frankel, James D. Berry, Indu Navar Bingham, Esteban G. Roitberg Introduction Monitoring respiratory function is essential for assessing the progression of Amyotrophic Lateral Sclerosis (ALS) and planning interventions. Remote pulmonary function testing offers a promising alternative to in-clinic visits by reducing participant burden and enabling more frequent and accessible measurements. Methods: To evaluate the feasibility and reliability of home-based spirometry in ALS, we built on the Radcliff Study, a fully remote, longitudinal, exploratory study conducted at home by 67 people with ALS (pALS). After an initial training period, participants managed their coaching autonomously, performing spirometry independently or requesting assistance from trained personnel. READ MORE Clinical assessment and interpretation of dysarthria in ALS using attention based deep learning AI models Michele Merler, Carla Agurto, Julian Peller, Esteban Roitberg, Alan Taitz, Marcos A. Trevisan, Indu Navar, James D. Berry, Ernest Fraenkel, Lyle W. Ostrow, Guillermo A. Cecchi and Raquel Norel Abstract Speech dysarthria is a key symptom of neurological conditions like ALS, yet existing AI models designed to analyze it from audio signal rely on handcrafted features with limited inference performance. Deep learning approaches improve accuracy but lack interpretability. We propose an attention-based deep learning AI model to assess dysarthria severity based on listener effort ratings. Using 2,102 recordings from 125 participants, rated by three speech-language pathologists on a 100-point scale, we trained models directly from recordings collected remotely. Our best model achieved R2 of 0.92 and RMSE of 6.78. Attention-based interpretability identified key phonemes, such as vowel sounds influenced by ‘r’ (e.g., “car,” “more”), and isolated inspiration sounds as markers of speech deterioration. This model enhances precision in dysarthria assessment while maintaining clinical interpretability. By improving sensitivity to subtle speech changes, it offers a valuable tool for research and patient care in ALS and other neurological disorders. READ MORE 2024 NEALS Conference A Novel, Self-Administered, App-Based Assessment of Motor Movement in ALS Christina Fournier (Emory University), Indu Navar (EverythingALS), Natalia Luchkina (EverythingALS), Christian Rubio (EverythingALS), and Stephanie Henze (EverythingALS) Abstract This study presents the ALS Motor App, a self-administered, AI-supported tool designed to remotely assess motor movement in individuals with ALS. The app evaluates 46 motor tasks across bulbar, upper extremity, trunk, and lower extremity regions through written descriptions and animated visuals. Users record their ability to perform tasks, with results stored in a central repository for review. Initial beta testing has refined the app using feedback from clinicians and people with ALS (pALS), with the tool now available on Google Play and the Apple Store. The app offers enhanced data granularity and accessibility, supporting adaptive algorithms that track motor decline and predict future care needs. Future work will validate the tool against standardized ALS measures and explore its reliability and predictive power for clinically relevant milestones. READ MORE medRxiv Listener effort quantifies clinically meaningful progression of dysarthria in people living with amyotrophic lateral sclerosis Indu Navar Bingham, Raquel Norel, Esteban G. Roitberg, Julián Peller, Marcos A Trevisan, Carla Agurto, Diego E. Shalom, Felipe Aguirre, Iair Embon, Alan Taitz, Donna Harris, Amy Wright, Katie Seaver, Stacey Sullivan, Jordan R. Green, Lyle W. Ostrow, Ernest Fraenkel, James D. Berry Abstract Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that causes progressive muscle weakness. Progressive bulbar dysfunction causes dysarthria and thus social isolation, reducing quality of life. The Everything ALS Speech Study obtained longitudinal clinical information and speech recordings from 292 participants. In a subset of 120 participants, we measured speaking rate (SR) and listener effort (LE), a measure of dysarthria severity rated by speech pathologists from recordings. LE intra- and inter-rater reliability was very high (ICC 0.88 to 0.92). LE correlated with other measures of dysarthria at baseline. LE changed over time in participants with ALS (slope 0.77 pts/month; p<0.001) but not controls (slope 0.005 pts/month; p=0.807). The slope of LE progression was similar in all participants with ALS who had bulbar dysfunction at baseline, regardless of ALS site of onset. LE could be a remotely collected clinically meaningful clinical outcome assessment for ALS clinical trials. READ MORE 2024 NEALS Conference Machine Learning Model Predicts Listener Effort in ALS-related Dysarthria Indu Navar (EverythingALS), Esteban G. Roitberg (Universidad Nacional de San Martín and EverythingALS), Julian Peller (Humai and EverythingALS), Marcos A. Trevisan (Universidad de Buenos Aires and CONICET), Diego E. Shalom (Universidad de Buenos Aires and CONICET), Felipe Aguirre (EverythingALS), Gastón Bujía (EverythingALS), Iair Embon (EverythingALS), Alan Taitz (SRI International), Raquel Norel (IBM Research), Carla Agurto (IBM Research), Donna Harris (Temple University), Amy Wright (EverythingALS), Katie Seaver (EverythingALS), Stacey Sullivan (EverythingALS), Jordan R. Green (MGH Institute of Health Professions), Lyle W. Ostrow (Temple University), Ernest Fraenkel (MIT), and James D. Berry (Massachusetts General Hospital and Harvard Medical School) Abstract This study applies machine learning (ML) to predict Listener Effort (LE), a key measure of speech impairment in ALS-related dysarthria. Using 2,124 speech recordings from 125 participants (105 pALS, 20 controls) and manual LE ratings by Speech-Language Pathologists (SLPs) with excellent inter-rater reliability, ML models demonstrated robust predictive capabilities. A simple Lasso regression model achieved an R² of 0.83, with Speaking Rate and Whisper Confidence identified as the two most significant features. Advanced ensemble models achieved even higher accuracy (R² of 0.94). These findings highlight the potential of ML in quantifying LE, offering scalable and reliable tools to track ALS progression and evaluate therapeutic interventions. READ MORE 2024 MND Conference A Novel Web App-Based Assessment of Cognition in ALS Using Speech Indu Navar (EverythingALS), Raquel Norel (IBM), Carla Agurto (IBM), Guillermo A. Cecchi (IBM), Bo Wen (IBM), Natalia Luchkina (EverythingALS), Stephanie Henze (EverythingALS), Alan Taitz (EverythingALS), Ahmad Al Khleifat (King’s College London), James Berry (MGH), Sharon Abrahams (University of Edinburgh), and Ammar Al-Chalabi (King’s College London) Abstract This study introduces a web app-based assessment for evaluating cognition in individuals with ALS, inspired by the Edinburgh Cognitive and Behavioral ALS Screen (ECAS). Data from 108 participants, including people with ALS and controls, were analyzed, with a subset completing repeated evaluations. Speech samples collected through picture description tasks were processed using Whisper Open AI for transcription, extracting acoustic and linguistic features. Linear regression models achieved Spearman correlations between 0.32 and 0.51 for predicting cognitive scores. The results highlight the potential of digitized, speech-based cognitive assessments as scalable, accessible alternatives to traditional methods, especially for individuals in remote or underserved areas. Future work will expand cohort size and refine methodologies to enhance accuracy and generalizability. READ MORE 2024 A Roadmap to Incorporating Digital Endpoints in Clinical Trials 2024-2025 Authors and Contributors EverythingALS Industry Consortia members, EverythingALS Scientific Advisory Board, regulatory advisors, and members of the ALS community, including pALS (people with ALS) and cALS (caregivers of people with ALS). The collaborative effort included input from biopharmaceutical professionals, clinicians, technology developers, and advocacy representatives. The acknowledgment section specifically highlights the ALS community's vital role in shaping the research and insights presented. Objective This white paper advocates for the integration of digital health technologies (DHTs) into ALS clinical trials to enhance efficiency, accessibility, and patient-centricity. Traditional endpoints in ALS trials are burdensome and often lead to high attrition and prolonged durations. By leveraging DHTs, trials can enable continuous, remote, and quantitative patient monitoring, thus reducing bias, improving retention, and broadening accessibility. The roadmap outlined emphasizes interdisciplinary collaboration, agile methodologies, and regulatory alignment to optimize the clinical trial experience for both pALS and cALS. These efforts aim to accelerate innovation, improve disease tracking, and foster a participant-centered research paradigm for ALS care and therapeutics. READ MORE 2024 Harnessing Remote Speech Tasks for Early ALS Biomarker Identification Carla Agurto (IBM), Michele Merler (IBM), Esteban G. Roitberg (EverythingALS), Alan Taitz (formerly EverythingALS, now at SRI International), Marcos A. Trevisan (Universidad de Buenos Aires, CONICET), Diego E. Shalom (Universidad de Buenos Aires, CONICET), Julian Peller (EverythingALS), Lyle W. Ostrow (Temple University), Indu Navar (EverythingALS), Ernest Fraenkel (MIT), James Berry (MGH), Guillermo A. Cecchi (IBM), and Raquel Norel (IBM) Abstract This study investigates acoustic biomarkers for the early detection and monitoring of Amyotrophic Lateral Sclerosis (ALS). Using a dataset of 6,276 speech sessions from 291 participants, including 135 pALS, acoustic features were extracted via OpenSMILE and analyzed with machine learning classifiers. Results show up to 90% AUC in distinguishing ALS stages and 66% AUC for early detection. These findings highlight the potential of speech tasks as biomarkers to improve early diagnosis, track progression, and enhance the understanding of ALS READ MORE ISPOR 2023 Real-World Treatment Preferences Among People Living with ALS: A Discrete Choice Experiment Biogen, Cambridge, MA Trinity Life Sciences, Waltham, MA NEALS Consortium, MA, IBM Research, Yorktown Heights, NY EverythingALS, Seattle, WA Objective Quantitatively assess which treatment attributes are most important to people living with amyotrophic lateral sclerosis (ALS; pALS) in the United States (US) when making treatment decisions. Through direct and indirect assessment of preference, pALS indicated a desire for efficacious treatment options that improve physical functioning and survival. READ MORE 2023 IEEE International Conference on Digital Health (ICDH) Remote Inference of Cognitive Scores in ALS Patients Using a Picture Description Carla Agurto (IBM), Guillermo Cecchi (IBM), Bo Wen (IBM), Ernest Fraenkel (MIT), James Berry (MGH), Indu Navar (EverythingALS) and Raquel Norel (IBM) Abstract In this paper, we focused on another important aspect, cognitive impairment, which affects 35-50% of the ALS population. In an effort to reach the ALS population, which frequently exhibits mobility limitations, we implemented the digital version of the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) test for the first time. READ MORE October 2023 Muscle and Nerve Identifying amyotrophic lateral sclerosis through interactions with an internet search engine Elad Yom-Tov (Microsoft Research) , Indu Navar (EverythingALS), Ernest Fraenkel (MIT) , James D. Berry (MGH) Microsoft Research, Israel EverythingALS, Seattle, WA MIT, Cambridge, MA, MGH, Harvard, MA Abstract We identified 285 anonymous Bing users whose queries indicated that they had been diagnosed with ALS and matched them to 1) 3276 control users and 2) 1814 users whose searches indicated they had ALS disease mimics. We tested whether the ALS group could be distinguished from controls and disease mimics based on search engine query data. Finally, we conducted a prospective validation from participants who provided access to their Bing search data. The model distinguished between the ALS group and controls with an area under the curve (AUC) of 0.81. READ MORE AMIA 2022 Annual Symposium ALS Community Pressing Issues: Lessons from a Survey A. Anvar (EverythingALS), J. Berry (MGH) , E. Fraenkel (MIT), I. Navar (EverythingALS), G. A. Cecchi (IBM), R. Norel (IBM) EverythingALS, Seattle, WA MGH, Cambridge, MA MIT, Harvard, Cambridge, MA IBM Thomas J. Watson Research Center, Yorktown Heights, NY Abstract We gathered survey data to identify the unmet needs expressed by Amyotrophic Lateral Sclerosis (ALS) patients, caregivers, and advocates. Natural Language Processing was used to summarize free text data. Identified needs, named anchor topics were selected manually from the data. Text embedding was used to score participant answers to anchor topics. Despite a broad range of opinions among cohorts, we detected pain control, better access to information and ALSFRS-R alternatives as important ALS community issues. Natural Language Processing (NLP) and Artificial Intelligence (AI) was used to analyze the unstructured text data to obtain a deeper understanding of respondents’ answers. READ MORE 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

About Us We believe the technology will be a key enabler for the innovation to end ALS, we are here to bridge the gap between patients, research and technology. Our diverse team is composed of patient advocates, students, nurses, physicians, entrepreneurs, artificial intelligence engineers, biologists, ALS patients, and spiritual guidance from one person who has reversed ALS. We are here to help provide information to all of those affected by ALS. EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts -- from care to cure -- for people with ALS, by offering a open-data platform for direct engagement with patients, caregivers, researchers and drug companies. PC: Peter Cohen How YOU Can Get Involved Write to us, we would love to hear from you. How did you hear about us? How did you hear about us? How did you hear about us? 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. Currently not enrolling ALS Radcliff Study : Multi-disciplinary focus

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. The ALS Gene Carrier Study Asymptomatic person with a known ALS Gene Families Fight Together A Family-Centered Approach to ALS & FTD Research We are enrolling individuals and families affected by ALS or FTD, including people living with the disease, asymptomatic individuals, genetic carriers, and family members who want to help. By participating, families help contribute meaningful data before symptoms appear, support prevention research, accelerate early detection, strengthen future prevention trials, and build the evidence needed for better treatments. This is how families move research forward — together. Participation is fully remote. Individuals or families share simple health data from home using digital tools that track speech, movement, and long-term changes over time. There’s no blood tests to begin, and no genetic testing required to join. Whether you’re living with ALS, are an asymptomatic gene carrier, or are a family member who wants to help, join now. Grab your family and submit our interest form below. Together, we can turn data into prevention. Who Can Join: This study welcomes everyone, both individuals and families who are: Living with ALS Pre‑symptomatic individuals (with or without genetic testing) Individuals with a two or more incidents of ALS or FTD in family Unaffected family members and friends as control participants Anyone that is 18+ years old residing in the United States 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 Leveraging advanced Artificial Intelligence technologies, we aim to measure and analyze ALS motor functions. Access your secured data, anytime! Study Procedure: Wear limb sensors that record motor function data Perform digital memory and thinking tests Record speech and facial movement data Sessions are conducted in the comfort of your home This study is conducted in partnership with Massachusetts General Hospital and Harvard Medical School with a generous support from ALS Finding a Cure .

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

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

Past Events Citizen Research on June 10th Virtual Event Details Fireside Chat with the Pathfinders Virtual Event Details Introduction to PIONEER-ALS: The first vectorized antibody trial targeting TDP-43 in sporadic ALS Virtual Event Details Citizen Research on May 13th Virtual Event Details Fireside Chat with the Pathfinders Virtual Event Details Updates & Innovations in the ALS Clinical Trial Landscape Virtual Event Details Unlocking the Origins of ALS Through Large-Scale Patient Data Virtual Event Details Fireside Chat with Pathfinders Apr 8, 2026 Virtual Event Details Which Cells Drive ALS? New Strategies for Designing Targeted Therapies Virtual Event Details Citizen Research on Mar 18th Virtual Event Details Fireside Chat with Pathfinders Mar 11, 2026 Virtual Event Details The PREVAiLS Study: Pridopidine for the Treatment of ALS Virtual Event Details HopeUntangled Virtual Event Details Fireside Chat with Pathfinders Feb 11, 2026 Virtual Event Details A New Diagnostic Biomarker for ALS with Dr. Sandra Banack and Dr. Rachael Dunlop Virtual Event Details To Kill a Motor Neuron: Model systems in the lab to understand ALS in the clinic with Dr. Stephen Kolb Virtual Event Details Fireside Chat with Pathfinders Jan 14, 2026 Virtual Event Details Chloroviruses in ALS with Dr. Gary Pattee Virtual Event Details Load 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. ALS Radcliff Study : Multi-disciplinary focus We are looking for Individuals with early symptom who have been diagnosed with Possible, Probable or Definite ALS Our IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology. By participating in this study, you will contribute to a growing large ALS dataset and further improve current assessment & treatment of individuals diagnosed with ALS using physiological signals and objective measurements. Your connection to ALS I am interested to participate in * Required The Speech Study to advance drug trials The Radcliff : Multi-disciplinary Study The ALS Gene Carrier Study 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 What is your shoe size? Women Men What is your t-shirt size? Country Submit What is the purpose of the study? This is a fully remote, observational, exploratory, non-controlled, non-drug study in people with Amyotrophic Lateral Sclerosis (ALS). The study seeks to explore whether specific digital measures gathered at home warrant further investigation as tools for monitoring clinical function and disease progression in ALS. This study is completely remote - all assessments will be completed in your home. The necessary equipment for the study will be sent to your house, which includes: Spirometers for breathing tests Feet sensors for walking analysis and an android smartphone EverythingALS mobile App will make it easy for you to navigate the study. The format consists of weekly ALS-FRS-R & proctors sessions with a research co-ordinator. Your total participation will be 9-12 months Any gender, age 18 Years and older Diagnosed with possible, probable, or definite ALS by a neurologist Able to walk without help (without using a cane or walker. Ankle-foot orthotics (AFO) are allowed, as long as the study sole inserts can be accommodated within their shoes. Are comfortable going up and down stairs without help safely. Use of hand railing is permitted and encouraged Exclusion Criteria: Inability to read, understand, and speak English Use of a ventilator, or non-invasive mechanical ventilation for more than 16 hours daily The full list of requirements for the study can be discussed with the study coordinator What is the eligibility criteria? What procedures will I participate in if I enroll in the study? How long will I be in the Study? Protocol Number: 2022-09-RAD-PI42 | Sponsor: Peter Cohen Foundation Contact Us Email: rad@everythingals.org

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EAP EverythingALS EAP Extended Access Program Lorem ipsum dolor sit amet consectetur adipisicing elit. Maxime mollitia, molestiae quas Come to our event First name Last name * Email Register Lorem ipsum dolor sit amet consectetur adipisicing elit. Maxime mollitia, molestiae quas vel sint commodi repudiandae consequuntur voluptatum laborum. Lorem ipsum dolor sit amet consectetur adipisicing elit. Maxime mollitia, molestiae quas vel sint commodi repudiandae consequuntur voluptatum laborum numquam blanditiis harum quisquam eius sed odit fugiat iusto fuga praesentium optio, eaque rerum! Provident similique accusantium nemo autem. Veritatis obcaecati tenetur iure eius. Veritatis obcaecati tenetur iure eius earum ut molestias architecto voluptate aliquam nihil, eveniet aliquid culpa officia aut! Impedit sit sunt quaerat, odit, tenetur error, harum nesciunt ipsum debitis quas aliquid.Reprehenderit, quia. Quo neque error repudiandae fuga? Lorem ipsum dolor sit amet consectetur adipisicing elit. Maxime mollitia, molestiae quas vel sint commodi repudiandae consequuntur voluptatum. Come to our event First name Last name Email* Phone How many will you be? How will you attend? Register

EverythingALS in the News Click here to VIEW our publications Publications DECEMBER 2024 EverythingALS and Compass UOL partner to advance artificial intelligence and computational biology by training and supporting 2,000 Top Talent to Cure ALS at Amazon web services(AWS) re:Invent 2024 in support from AWS LAS VEGAS, Dec. 4, 2024 /PRNewswire/ --A partnership between Compass UOL, an AI transformation services company, and non-profit EverythingALS is using artificial intelligence to address Amyotrophic Lateral Sclerosis (ALS), one of the most intractable puzzles in medicine. EverythingALS and Compass UOL officially launched their partnership on December 4 at 4:00 PM PT at the annual AWS re:Invent conference at the AWS for Healthcare and Life Sciences booth within the AWS for Industries Pavilion. Read more DECEMBER 2024 EverythingALS and Compass UOL partner to advance artificial intelligence and computational biology by training and supporting 2,000 Top Talent to Cure ALS at Amazon web services(AWS) re:Invent 2024 in support from AWS LAS VEGAS, Dec. 4, 2024 /PRNewswire/ --A partnership between Compass UOL, an AI transformation services company, and non-profit EverythingALS is using artificial intelligence to address Amyotrophic Lateral Sclerosis (ALS), one of the most intractable puzzles in medicine. EverythingALS and Compass UOL officially launched their partnership on December 4 at 4:00 PM PT at the annual AWS re:Invent conference at the AWS for Healthcare and Life Sciences booth within the AWS for Industries Pavilion. Read more DECEMBER 2024 EverythingALS and Compass UOL partner to advance artificial intelligence and computational biology by training and supporting 2,000 Top Talent to Cure ALS at Amazon web services(AWS) re:Invent 2024 in support from AWS LAS VEGAS, Dec. 4, 2024 /PRNewswire/ --A partnership between Compass UOL, an AI transformation services company, and non-profit EverythingALS is using artificial intelligence to address Amyotrophic Lateral Sclerosis (ALS), one of the most intractable puzzles in medicine. EverythingALS and Compass UOL officially launched their partnership on December 4 at 4:00 PM PT at the annual AWS re:Invent conference at the AWS for Healthcare and Life Sciences booth within the AWS for Industries Pavilion. Read more MAY 2024 EverythingALS CEO Indu Navar and Chairman Bill Nuti talk ALS awareness month with Jim Cramer Read more MARCH 2024 EverythingALS Launches the Vision 2030 AI Hub : Charting the Path to an ALS Cure and Advancing Neurodegenerative Disease Research Vision 2030 will utilize advanced technologies and an innovative operating model for research and drug development Read more JUNE 2023 AI could provide breakthrough for early diagnosis of rare diseases For people living with rare diseases, one of the major challenges is being able to receive a rapid and accurate diagnosis. Often the process takes years, but Ben Hargreaves finds that there is a new wave of research utilising AI that could change this. Read more JUNE 2023 Could AI help diagnose diseases like ALS more quickly? BOULDER, Colo. (KDVR) — Michael Robinson was diagnosed with amyotrophic lateral sclerosis, or ALS, almost eight years ago when he was just 45 years old. “I was late for a meeting and went to go run and couldn’t get my right leg to move, and being a physician and knowing what I know, my immediate thought was I think I have ALS,” the Boulder resident said. Read more JUNE 2023 EverythingALS: Searching for a Cure with AI EverythingALS, a patient-focused non-profit, is currently conducting the world's largest AI-powered ALS study. John Howell is joined by Indu Navar, Founder of EverythingALS, to discuss the details of the study and history behind the non-profit. The study is still taking participants, both those who have ALS and those who don't. For more information, visit everythingals.org. Read more JUNE 2023 Non-profit Conducts Studies to Help with ALS "The way I look at it, as technology is here today. We can make an impact to people with ALS today. So, what we are doing is we're looking at these progression markers and applying this to clinical trials that's happening today. So, we work with about 11 pharma companies that partnered with us on this initiative," Founder and CEO of EverythingALS Indu Navar said. Read more JUNE 2023 Everything ALS works to help doctors and families diagnose the disease faster While reflecting on the process that her family endured while her husband battled the disease, Navar says, "There is something called diagnosis fatigue. And it really creates a lot of very, very deep, deep sorrow and grief just going through the diagnosis because it is, I say, it's death by a thousand cuts." Read more JUNE 2023 Tech entrepreneur aims to use artificial intelligence to speed up diagnoses of ALS DETROIT LAKES — Using artificial intelligence and machine learning, a tech entrepreneur is going after the fatal disease of ALS – also known as Lou Gehrig's Disease. Read more JUNE 2023 Bringing Technology to ALS CARE Indu Navar, founder of EverythingALS, joins Amy & JJ. And, just in time for the Fargo walk. Read more APRIL 2023 "EverythingALS" joins Harvard, MIT and IBM for unique research EverythingALS founder Indu Navar joined Kyla Grogen to discuss the unique research they are conducting with Harvard, MIT, and IBM. Watch the clip to learn how recording your voice for 20 minutes a week could be the key to finding a quicker way to diagnose and treat ALS. Read more APRIL 2024 Listen Up: Emerging Vocal Biomarker Could Aid ALS Drug Development It’s been a disappointing spring for the amyotrophic lateral sclerosis community, with the Phase II failure of Sanofi and Denali Therapeutics’ candidate and Amylyx’s decision to pull Relyvrio from the market . But drugmakers are hopeful that the development and validation of novel biomarkers for the disease, including neurofilament, genetic markers and, more recently, speech, can help improve patient care and expedite the development of effective treatments. Read more MARCH 2024 Deciphering the cellular mechanisms behind ALS At MIT, Fraenkel works in the Department of Biological Engineering and co-directs the Computational Systems Biology graduate program. For the study of ALS, he and his collaborators at Massachusetts General Hospital (MGH), including neurologist and neuroscientist Merit Cudkowicz, were recently awarded $1.25 million each from the nonprofit EverythingALS organization. The strategy behind the gift, Fraenkel says, is to encourage MIT and MGH to increase their collaboration, eventually enlisting other organizations as well, to form a hub for ALS research “to break down barriers in the field and really focus on the core problems.” Read more MARCH 2024 A new way to detect ALS in patients ALS is a crippling disease that affects the nervous system. There is a new and easier way to detect ALS. ALS also known as Lou Gehrig’s disease, affects the nervous system by weakening muscles and ultimately paralyzes the patient. Indu Navar is the CEO and Founder of Everything ALS, she says there is a new effort to help ALS patients by using AI machine learning. Read more MARCH 2024 Citizen-Driven Research Aids Development Of Digital Biomarkers For ALS March 20, 2024 | When it comes to research on amyotrophic lateral sclerosis (ALS), every stakeholder—most especially patients—knows time is of the essence. From diagnosis to death, life expectancy from the debilitating neuromuscular disease can be two years or less. “The time people give us is currency,” says Indu Navar, founder of the nonprofit Peter Cohen Foundation operating as EverythingALS. Read more JANUARY 2024 Citizen-Driven Research Aids Development Of Digital Biomarkers For ALS When it comes to research on amyotrophic lateral sclerosis (ALS), every stakeholder—most especially patients—knows time is of the essence. From diagnosis to death, life expectancy from the debilitating neuromuscular disease can be two years or less. “The time people give us is currency,” says Indu Navar, founder of the nonprofit Peter Cohen Foundation operating as EverythingALS. Read more JANUARY 2024 Governor Hochul proposes historic $25m budget for ALS research in New York A groundbreaking moment in the search for a cure for ALS. Governor Hochul is looking to set aside a historic amount of money for ALS research in New York. She made the announcement in her budget address last week, but in this week's Wellness Wakeup, you'll see for the governor and many others, it's personal. Read more DECEMBER 2023 10 unexpected ways life changes when you become a family caregiver Some family caregivers go into it knowing that caring for a loved one is their fate, while others are unexpectedly thrust into it. But whether it’s expected or not, the family caregiving journey is rarely predictable, says Jody Gastfriend , a licensed clinical social worker, author and senior care consultant. Read more DECEMBER 2023 Slowing ALS with Speech: Study leverages IBM’s AI, creates digital biomarkers EverythingALS is working with clinical research stakeholders from IBM Research, Massachusetts Institute of Technology, and Harvard University in a longitudinal study focused on early disease detection based on patterns noted in audiovisual sessions. Read more OCTOBER 2023 Former tech executive leads nonprofit to help those with ALS Moving from tech entrepreneurship to caregiving was never a step Indu Navar expected to make, but this leap of faith turned out to be transformative. Today, she is making use of both skill sets as the CEO and founder of EverythingALS , a nonprofit patient-led advocacy group focused on creating digital biomarkers for early detection of ALS. Read more SEPTEMBER 2023 EverythingALS Announces Student Fellow Scholarship Awards and Expanded Student Ambassador Program aims to accelerate ALS Research SEATTLE, Sept. 27, 2023 (GLOBE NEWSWIRE) -- EverythingALS, a citizen science research organization dedicated to developing cure for ALS, announced today the Student Fellow Scholarship Awards and the expansion and continued enrollment of student Ambassadors program. Both programs are core pillars of the EverythingALS Care to Cure™ impact model. Read more SEPTEMBER 2023 Local ALS Association Chapter’s ‘Walk to Defeat ALS 2023’ held in Salem SALEM, Va. (WFXR ) — On Sept. 16, different ALS Association Chapters across the nation hosted their annual Walk to Defeat ALS. Our local chapter in Virginia was no different. The event was to raise funds for amyotrophic lateral sclerosis or Lou Gehrig’s disease. It’s a rare progressive neurological disorder that affects nerve cells in the brain and spinal cord resulting in weakened muscles. Currently, it’s a terminal diagnosis, meaning it has no cure. Read more AUGUST 2023 New $400,000 Grant Supports EverythingALS.org and Mass General Hospital (MGH) to Develop NeuroLens, a Digital Diagnostics technology initiative for early detection of Amyotrophic Lateral Sclerosis (ALS) SEATTLE--(BUSINESS WIRE )--EverythingALS today announced it has received $400,000 from ALS Finding a Cure® and The ALS Association to support studies for the identification of early digital diagnostic markers of ALS. Read more AUGUST 2023 Buffalo's ALS ambassador raising awareness ahead of weekend walk ORCHARD PARK, N.Y. (WKBW) — It is a disease that robs people of their ability to walk, talk, swallow and eventually breathe. ALS, often called Lou Gehrig's Disease most commonly afflicts people between the ages of 40 and 70. As many as 30,000 Americans have the disease at any given time. This Saturday, Buffalo will be hosting the Western New York Will Walk to Defeat ALS , at Delaware Park. Read more JULY 2023 Merging as EverythingALS, 2 nonprofits seek to better treatment “We firmly believe that the proliferation of non-profit organizations in this field leads to duplication of efforts, wasting precious time, money, and most importantly, lives,” Bill Nuti, CureALS’ founder and CEO and now chairman of the board of directors for Everything ALS, said in a joint press release . Read more JULY 2023 EverythingALS and CureALS Join Forces to Discover a Cure for ALS “They reflect our commitment to advancing research, improving diagnosis and therapies, leveraging data for analysis and technology integration, and ensuring comprehensive support for people living with ALS and FTD.” Read more JULY 2023 California tech company using artificial intelligence in ALS studies BOULDER, Colo. — More than 5,000 Americans are diagnosed with amyotrophic lateral sclerosis (ALS) each year, and roughly 600 people are here in Colorado, according to the Rocky Mountain chapter of the ALS Association. Read more JUNE 2023 Groundbreaking Nonprofit, CureALS Founded and Launched by Former NCR Chairman and CEO Bill Nuti to Eradicate ALS NEW YORK--(BUSINESS WIRE )--CureALS, a pioneering nonprofit organization dedicated to eliminating ALS (Amyotrophic Lateral Sclerosis) and other complex neurodegenerative diseases such as Alzheimer’s, Parkinson’s, and Frontotemporal Dementia, has officially launched today. Read more APRIL 2023 How AI and Facial Recognition Could Spot Stroke and Other Diseases Researchers are training computer algorithms in efforts to quickly identify ailments and speed treatment. Patients at Johns Hopkins Hospital who are suspected of having a stroke might get an unusual request from physicians: Can we film your face ? The doctors’ goal is to identify stroke patients by facial characteristics instead of waiting for brain scans or blood tests, helping speed both treatment and recovery. Read more APRIL 2023 Non-profit behind world's largest AI-powered ALS study ST. PETERSBURG, Fla. — ALS non-profit EverythingALS is using artificial intelligence and other technologies to help find a way to diagnose ALS and other neurological diseases faster and find a cure. It’s partnering with healthcare companies in the effort and conducting speech research to spot and track early signs of ALS. Read more APRIL 2023 Project CommUNITY Women Breaking Barriers: Indu Navar, Founder of Everything ALS "I made a promise to him that I will keep fighting for him and the disease,” Navar said. “And we need to prevent from other people going through what we went through. I want to keep them alive through this work. And I really feel it was such a terrible experience for us that I really don't wish this on anybody" Read more APRIL 2023 How AI CAN LOOK INTO YOUR EYES AND DIAGNOSE A DEVASTATING BRAIN DISEASE “The eyes are the windows to the soul.” It’s an ancient saying, and it illustrates what we know intuitively to be true – you can understand so much about a person by looking them deep in the eye. But how? And can we use this fact to understand disease? Read more MARCH 2023 STUDY SEEKS TO IMPROVE ALS DIAGNOSES WITH AI Speech recognition patterns can give clues to neurological conditions A study is underway to determine AI’s suitability for diagnosing the neurological disease ALS. The study is using AI-powered virtual assistants to detect potential signs of ALS in a participant’s speech patterns and facial gestures. Read more FEBRUARY 2023 LOCAL RESIDENT REVEALS HIS ALS JOURNEY Learn about the ALS journey of local resident Tommy Culpepper and find out you can support him! - KNWA & FOX24 - Northwest Arkansas & River Valley News + The ALS Association Arkansas Chapter Read more FEBRUARY 2023 What Dr. Chatbot ordereD Your doctor could be a robot sooner than you think. The pandemic and its toll on the health care sector spurred interest in the role artificial intelligence can play in easing burdens and improving efficiency, particularly via chatbots to tackle routine tasks like scheduling appointments and billing issues. But evidence is building that suggests chatbots are already pretty good at giving health advice. Read more JANUARY 2023 Montgomery County man with ALS part of study that aims to find root cause of disease "When a man died, he was said to have gone west," repeated 59-year-old Todd Kelly into a computer. He isn't reading a best-selling novel, but reciting speech to help treat and cure ALS. "The problem with ALS, unlike many other diseases, is they can't find a biomarker. The biomarkers, what you can see, is affected by a treatment," he described. Read more JANUARY 2022 Getting Vocal In December of 2016, Valerie Geerer was doing her normal lunchtime walk with work colleagues when a friend noticed something off about her gait. “I remember she said, ‘Is there something the matter with your foot?’” the fifty-nine-year-old Stamford resident recalls. “I told her I felt fine. A month later I was tripping myself. It was ironic. Six months earlier, my husband Michael and I were climbing mountains in Utah. And suddenly I couldn’t walk without stumbling.” Read more DECEMBER 2022 ALS genetic carrier finds the “path to higher ground” in clinical research ALS genetic carrier finds value in EverythingALS study leveraging digital biomarkers as a means to create tools for early detection of ALS and potentially other neurological diseasese. Read more DECEMBER 2022 New way to detect ALS; early diagnosis critical for treatment LAS VEGAS (KLAS) — Every 90 minutes, someone gets diagnosed with amyotrophic lateral sclerosis, or ALS. It’s a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and there is no cure. Read more NOVEMBER 2022 Woman's Husband's Health Journey Inspires Everything ALS NBC10’s Erin Coleman speaks to Everything ALS founder Indu Navar about her husband’s own ALS diagnosis and how the group is working to better ALS research. You can help the fight through Everything ALS or at the 2022 Walk to Defeat ALS. Read more NOVEMBER 2022 Walk to Defeat ALS happening in North Las Vegas Indu Navar, founder of EverythingALS, joined us to talk about how your participation helps raise funds and awareness. WATCH HERE NOVEMBER 2022 Non-profit conducts study to diagnose ALS quicker LANSING, Mich. (WLNS) — In the 150 years since ALS was discovered there is still no cure or single test to diagnose the disease. The demand for more answers is what drove one woman to start up her own non-profit. EverythingALS began its research in 2021 and now they’re working toward diagnosing the disease faster. “I really want to help people who are going through this disease,” said Indu Navar, Founder of EverythingALS. The study analyzes data when it comes to physiological changes and the progression of the disease. Navar says she wants to shift the focus to the brain, something she believes isn’t understood well enough. READ MORE SEPTEMBER 2022 Q&A With Indu Navar, founder of Everything ALS Indu Navar, founder of Everything ALS, speaks with Pharm Exec about how she lost her husband to the disease and how she's trying to improve the way its diagnosed. Indu Navar Diagnosing ALS is a difficult process for patients experiencing symptoms. After the death of her husband, tech entrepreneur Indu Navar founded Everything ALS, and organization she hopes will refine and improve the way ALS and other neurological conditions are diagnosed. READ MORE OCTOBER 2022 New technology helping ALS patients in Louisiana BATON ROUGE, La. (BRPROUD) — ALS, often called Lou Gehrig’s disease, is a progressive motor neuron disease that gradually robs people of their ability to walk, talk, swallow, and eventually breathe. Indu Navar, the founder of EverythingALS, said, “ALS has no known cause or cure and so patients suffer for years not knowing what is wrong and have to go through rigorous testing and a process of elimination to finally get diagnosed. If they are diagnosed, there are no treatments. Life expectancy is two to five years.” READ MORE SEPTEMBER 2022 EverythingALS Joins Forces with Aural Analytics, FeetMe, ZEPHYRx and Others for a First-Of-Its-Kind ALS Research Study SAN FRANCISCO (PRWEB) SEPTEMBER 19, 2022 EverythingALS, a patient-focused non-profit that brings together people living with ALS, caregivers, physicians, researchers, and pharmaceutical companies to collaborate on an open innovation platform using cutting-edge technologies and data science to improve progression measurements for neurological disease like Amyotrophic Lateral Sclerosis (ALS), has initiated a new study, The Radcliff Study, with partners in the quest to find a diagnosis, treatment, and cure for ALS... READ MORE AUGUST 2022 Groundbreaking research involving artificial intelligence could diagnose ALS patients sooner Five thousand people in the U.S. are diagnosed with a neurological disease called ALS every year. Medical experts say it typically takes an average of two years to diagnose, but new research will likely make that timetable a lot shorter. In 2019, Mark Weston and his wife, Kathleen, had their retirement all planned out. "We were all set up for a sail off into the sunset and have a really fun retirement," Weston said. "We had, we bought a house on the coast of Maine several months earlier." A week before the big move, he got a life-changing diagnosis. READ MORE AUGUST 2022 NeuroSense Joins EverythingALS Open Innovation Consortium; Set to Enroll US and EU Patients in Phase IIb Study NeuroSense's support will aid EverythingALS with ground-breaking patient research in a joint effort to develop treatments LOS ALTOS, Calif. and CAMBRIDGE, Mass., Aug. 2, 2022 /PRNewswire/ -- EverythingALS , a patient-focused non-profit that brings together patients, caregivers, physicians, researchers, and pharmaceutical companies using technological innovations and data science to support efforts to improve care for those living with a neurological disease like Amyotrophic Lateral Sclerosis (ALS), today announced NeuroSense Therapeutics Ltd. (NASDAQ: NRSN ) ("NeuroSense"), a company developing treatments for severe neurodegenerative diseases, as a new collaborator in the effort to identify treatments and a cure for ALS. READ MORE AUGUST 2022 ‘Death by 1,000 cuts:’ How emerging tech could change the journey for ALS patients EverythingALS aims to speed drug development through improved diagnostics. in 2016, Indu Navar’s husband, Peter Cohen, experienced the first symptom of what turned out to be amyotrophic lateral sclerosis (ALS), a progressive degenerative disease commonly known as Lou Gehrig’s disease. EverythingALS founder Indu Navar Permission granted by EverythingALS/Indu Navar “His foot was just acting weird,” says Navar, who founded the California nonprofit EverythingALS two years ago. “We didn’t know where to go, so we went to a chiropractor,” she says. READ MORE JULY 2022 Healthbeat: New ALS research driven by patient-focused non-profit SCRANTON, LACKAWANNA COUNTY— New research is underway to better understand and treat ALS, a difficult disease to diagnose with no known cure. ALS patient Paul Miller of Scranton is one of the participants. The progressive neurodegenerative disease ALS affects as many as 30,000 Americans. There is no known cure despite efforts to better understand it and treat it. ALS is a puzzling disease for certain with so much needing to be learned about it. READ MORE TOMMY EDWARD CULPEPPER,Jr MOVIE CONNOISSEUR JULY 2022 Bentonville man works to help diagnose ALS sooner A Bentonville man is dedicating his life to advocating for people with ALS and trying to help diagnose the disease sooner. “I’m a movie connoisseur,” said Tommy Edward Culpepper, Jr. “I love movies.” For Culpepper, movies have always been his saving grace. Even when he was a kid growing up in St. Louis, Missouri. “I grew up in the Peabody Projects and the home environment wasn’t the greatest,” he said. “Star Wars, Blade Runner, Highlander. Movies like that are excellent getaways for me.” Until he found himself in a nightmare that started in the doctor’s office... READ MORE JULY 2022 These 2 Surprising Traits May Predict ALS, New Research Says How ALS researchers are using an intriguing tool to learn keys of this disease that has at times taken years to diagnose. Plus, one woman's story of why she agreed to participate in this research Amyotrophic lateral sclerosis (sometimes called Lou Gherig’s disease, or ALS ) affects around 15,000 Americans, with about 5,000 receiving a new diagnosis each year, according to the Centers for Disease Control and Prevention. READ MORE JUNE 2022 Continue that momentum from the ALS Ice Bucket Challenge by getting involved in a unique study - New Day NW Researchers want every American to start recording their voice daily. They believe this data could be used to eventually develop cures for ALS. #newdaynw READ MORE MAY 2022 Patients giving voice to ALS research Back in 2014, millions of people poured icy water over their heads to spread ALS awareness and support research for the devastating neurodegenerative disease. Now tech developers want to hear your voices. Brian Andre has been living with ALS for six years. “On average they only give you 2 to 5 years of life after diagnosis and some progress very quickly,” he said. “I’m really in a very small percentage of patients who see little or no progression. … My weakness is in my left side, left leg and arm. So it throws my gait off.” READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 Live At 9: Researchers Collecting Audio and Video to Help ALS Detection Remember the summer Americans took time to dump buckets of ice water on their heads to help fight the deadly disease ALS? This summer, there’s a more comfortable way to help researchers learn about ALS and other neurological disorders. Researchers want people to record their voices and upload them for study. READ MORE Austen Eadie-Friedmann before his diagnosis of amyotrophic lateral sclerosis or ALS MAY 2022 A Connecticut man is battling a fatal disease with ‘enormous courage’. Love and his work with an ALS group give him ‘purpose Three years ago Austen Eadie-Friedmann, 38, had a dynamic career in the pharmaceutical/biotech field working for a Fortune 500 company and living in exciting places such as New York City, Boston and Europe, with his husband, William DeGregorio. The couple, now together for 18 years and married for five, loved their life traveling the world, sharing a passion for art. Then the devastating diagnosis arrived... READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 How high tech shoes could help doctors better understand ALS MOUNTAIN VIEW, Calif. - There is no cure for ALS, the progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, but a Silicon Valley nonprofit is hoping to change that. Starting Tuesday, EverythingALS , a Silicon Valley nonprofit and advocacy group, is starting its second research study involving ALS patients, using shoes with high-tech censors to track and study their movements. The study is open to 100 participants in the early stages of ALS, and is still accepting new participants.... READ MORE MAY 2022 Tech Tuesday: Using AI to fight ALS LANSING, Mich. (WLNS) — One non-profit organization is using technological innovations and data science to support those grappling with amyotrophic lateral sclerosis, otherwise known as ALS. EverythingALS was started by Indu Navar. READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 Bringing Awareness To ALS And Those Who Suffer From It In this podcast, we are joined by Indu Navar. Indu Navar is the CEO of Everything ALS, a company that prioritizes bringing awareness to Amyotrophic Lateral Sclerosis (ALS) and those who suffer from it. ALS is a neurological condition that affects the victim's motor neurons. This causes muscle atrophy all across the body, which can eventually cause suffocation and even death. LISTEN NOW APR 2022 Be The Good with Kate Cherichello Be the Good with Kate podcast- Kate Cherichello scheduled a taped interview with Indu for Wednesday, March 9th at 3:30pm EST to discuss EverythingALS and the research study. Episode went live on April 29th. LISTEN NOW FEB 28, 2022 MITSUBISHI TANABE PHARMA JOINS EVERYTHINGALS CONSORTIUM TO HELP ACCELERATE BIOMARKER DISCOVERY FOR NEUROLOGICAL DISEASES (San Francisco, CA)-- Today, EverythingALS.org (EALS), a patient-centric, citizen-based California nonprofit accelerating the discovery of digital biomarkers for neurological diseases such as amyotrophic lateral sclerosis (ALS), announced that Mitsubishi Tanabe Pharma Holdings America, Inc. READ MORE FEB 12, 2022 San Francisco based nonprofit launches new ALS research SAN FRANCISCO (KCBS SF) — A San Francisco-based nonprofit is recruiting average people to take part in ALS research. KCBS Radio’s Keith Menconi explains. READ MORE DEC 2021 ALS, Lou Gehrig’s Disease, takes many lives, Everything ALS is doing Deb Fabricatore lost her younger brother to ALS in 2014, and became involved in ALS advocacy. Indu Navar lost her husband in 2019 and immediately stepped up into action by building a nonprofit devoted to honoring her husband. READ MORE Bay Area Nonprofit Seeks 300 Volunteers in ALS Speech Study SAN FRANCISCO (CBS SF) — A Bay Area nonprofit dedicated to advancing research on an incurable — and fatal — disease of the nervous system is looking for 300 more people by the end of this month to participate in the largest-ever research project on the illness. READ MORE NOV 21, 2021 EverythingALS said it needs more than 300 volunteers for its study to combat amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease, an incurable, degenerative illness. READ MORE NOV 21, 2021 Bay Area non-profit looking for volunteers in Lou Gehrig diseases study OCT 2021 EverythingALS Launches “Stories and Innovation in ALS” Podcast October 21, 2021 (Silicon Valley, CA) – For an inside look at how ALS impacts patients and their caregivers as well as the innovations that researchers and clinicians are coming up with to find biomarkers, treatments, and cures for this life-threatening disease, start listening to the EverythingALS podcast , “Stories and Innovation in ALS.” EverythingALS (EALS) was founded in 2020 to help discover biomarkers – which are nonexistent -- and document the progression of ALS by launching the world’s largest speech study with more than 600 participants. READ MORE APRIL 2021 Accelerating Rare Disease Research TEDxSantaCatalinaSchool In this moving, TEDx talk, Indu Navar tells how she lost her husband, Peter Cohen, to ALS and what she is doing to bring together patients, families, researchers and people everywhere to change the way that rare diseases are looked at. WATCH VIDEO Digital Health InfoCast: Machine Learning for a Cause Canada has been an early leader in the AI space and there is no shortage of activity flourishing across the country. Today, we welcome Fanny Sie from Roche Canada and Indu Navar of Everything ALS to talk about machine learning and the End ALS Kaggle Challenge . LISTEN JULY 30, 2021 Indu Navar, CEO and Founder of EverythingALS, explores the roles of Artificial Intelligence, Machine Learning, and Brain Computer Interface in the search for a cure for ALS. She will also share innovative research studies on ALS detection, how Pharma can work with and support ALS patient advocates, and her key leadership lessons for digital health entrepreneurs and innovators. WATCH VIDEO JUNE 25, 2021 Impetus Digital PODCAST JULY 2021 New project to better identify and treat ALS uses AI and data sharing Through the AI CoE, Roche has collaborated with EverythingALS , AnswerALS, the Ontario Brain Institutes and ALS Canada to launch an open data science competition called the End ALS Challenge. READ MORE READ MORE Mar 29, 2021 THE STORY OF MODALITY.AI: HEALTHTECH AWARD WINNER Suendermann-Oeft states that one of the most significant achievements for them has been collaborating with the non-profit organization EverythingALS , as well as MIT, Harvard, and IBM to scale the number of Modality platform users to over 100 within three months for a study focusing on the early detection and improved prognostic accuracy of ALS ... "Jody O'Donnell introduced me to the founders of every Everything ALS , brother and sister, Murgesh Navar and Indu Navar, and Indu lost her husband to ALS a few years ago. Really, we just kind of hit it off from the get-go. Tremendous pair, both kind of serial entrepreneurs; they started multiple companies in the Bay Area and they just brought a passion and energy, a desire to do things quickly and challenge the status quo ... READ MORE April 30, 2021 interview with Katie Pecora for Patients Rising The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge , with the support of ALS Society of Canada , Ontario Brain Institute (OBI) and NetraMark Corp . The goal is to surface insights through an open data competition.. READ MORE Mar 29, 2021 EndALS Kaggle Challenge to TACKEL ALS EverythingALS Selected to Present at the American Academy of Neurology Virtual Annual Meeting EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science to support people with ALS, has been selected to ... READ MORE April 16, 2021 READ MORE Mar 25, 2021 Roche Canada AI Centre and EverythingALS to tackle ALS The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge, with the support of ALS Society of Canada, Ontario Brain Institute (OBI) and NetraMark Corp... Roche Canada Artificial Intelligence Centre and EverythingALS opens digital competition to tackle ALS EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science to support people with ALS, has been selected to ... READ MORE Mar 18, 2021

EverythingALS Publications Publications 2026 MDA Poster AI-Assisted ECAS Copilot to Support Test Administration and Improve Standardization in ALS Cognitive Screening Anusha Rao, Raquel Garcia, Silviya Bastola, Lauren Gray, Indu Navar, Sharon Abrahams, Ammar Al-Chalabi, Natalia Luchkina Abstract Cognitive and behavioral impairment affects up to 50% of people with amyotrophic lateral sclerosis (ALS). The Edinburgh Cognitive and Behavioural ALS Screen (ECAS) is an ALS-specific assessment that requires real-time transcription and structured scoring, introducing potential inter-rater variability. We developed a human-in-the-loop AI copilot to support ECAS administration with live transcription and guideline-based scoring suggestions while maintaining clinician oversight. In two retrospective datasets, high variability and error rates were observed in subtests requiring transcription and semantic judgment, In contrast, AI-assisted scoring produced fully consistent results for identical responses. Our ECAS copilot may improve scoring consistency, reduce administrator burden, and support remote assessment, which participants generally preferred and which substantially lowers environmental impact. A prospective validation study is currently ongoing. READ MORE 2025 Community Perspective Critical Bottlenecks in Rare Disease Research and Care: A Community Perspective Julie McMurry, Alison Sizer, Robert Allaway, Cornelius Boerkoel, AJ Chen, Jason Colquitt, James Cummings, Autri Dutta, Nasha Fitter, Robert Green, Adam Hansen, Eric Harker, Nomi Harris, Collin Hovinga, Ari Kahn, Hans Keil, Rodger Kessler, Lukas Lange, Arturo Loaiza-Bonilla, Natalia Luchkina, Eric Luellen, Arezoo Movaghar, Tomi Pastinen, Elizabeth Rountree, Vivek Rudrapatna, Adam Sand, Katharina Schmolly, Patrick Short, Marina Sirota, Geoffrey Siwo, Nicholas Tatonetti, Natan Vidra, Farid Vij, Samuel Volchenboum, Anita Walden, Ramona L. Walls, Peter Washington, Dylan Wenzlau, Margaret Wenzlau, Matthew Wheeler, Charlene Son Rigby, Melissa Haendel Abstract This document details an impromptu community gathering following the cancellation of an ARPA-H proposer's day for the Rare Disease AI/ML for Precision Integrated Diagnostics (RAPID) program . The discussion became a powerful example of how shared commitment to improving patient outcomes can transcend institutional boundaries and administrative hurdles. This white paper synthesizes perspectives from healthcare providers, academic researchers, industry experts, registry providers, and people with lived experience to identify critical bottlenecks that must be addressed to accelerate progress in the rare disease field. READ MORE 2025 NEALS Poster Evaluating the Precision of Quantitative Voice Characteristics as Endpoints in ALS Clinical Trials Macklin EA, Kim M, Sharma S, Taitz A, Peller J, Ostrow LW, Fraenkel E, Paganoni S, Cudkowicz ME, Shefner JM, Vogel AP, Navar Bingham I, Berry JD for the HEALEY ALS Platform Trial Study Group Abstract Progressive bulbar dysfunction, including dysarthria, is a common feature of ALS. Quantitative voice characteristics have been proposed as low-burden digital biomarkers of disease progression and potential pharmacodynamic biomarkers in ALS clinical trials. We used data from the first four regimens of the HEALEY ALS Platform Trial, where participants completed structured speech recordings in clinic and at home over 24 weeks. Multiple voice metrics were derived alongside independent assessments of listener effort, naturalness, and intelligibility. Listener effort, which measures communication through speech, showed high relative precision, whether rated by speech-language pathologists or estimated using a machine-learning model. Among low-level metrics, articulatory precision and pause rate had the highest relative precision. Restricting speech recordings to only in-clinic or only at-home settings, or reducing assessment frequency, increased variance, with an inflection when sampling less frequently than every 14 days. These findings highlight the importance of selecting sensitive metrics, maintaining frequent assessments, and optimizing cohort selection to advance speech-based endpoints in ALS trials. READ MORE 2025 ASHA Presentation Hidden in Plain Sight: Unlocking the Potential of SLP Expertise for Clinical Trial Advancement Designated as Centennial Session Centennial sessions are characterized by their ability to foresee and address future challenges, shape industry practices, and lead transformative initiatives. Katie Seaver, Lyle Ostrow, Donna Harris, Kathryn Wright, Jordan Green Abstract This session highlights the critical expertise of Speech-Language Pathologists (SLPs) in unlocking the potential of perceived listener effort (LE) as a clinically meaningful outcome measure for Amyotrophic Lateral Sclerosis (ALS).  We will explore the EverythingALS Speech Study, which leverages remote speech recordings and expert SLP ratings of LE to monitor dysarthria progression. Learn how LE provides a more sensitive and holistic assessment of communication impairment compared to traditional measures of intelligibility, severity, or the ALS Functional Rating Scale-R.  Discover the reliability of SLP scoring across different datasets and the potential of LE to serve as a valuable endpoint in ALS clinical trials, emphasizing the indispensable role of SLPs in advancing research and drug development in this field. READ MORE ENCALS LEPM Poster Machine Learning Model Predicts Listener Effort in ALS-related Dysarthria Esteban G. Roitberg, Marcos A. Trevisan, Julian Peller, Diego E. Shalom, Felipe Aguirre, Gastón Bujía, Alan Taitz, Donna Harris, Katie Seaver, Stacey Sullivan, Amy Wright, Jordan R. Green, Jason Osik, Ryan A. Shewcraft, Peng Jiang, Joel Schwartz, Ernest Fraenkel, James D. Berry, Indu Navar Bingham, Lyle W. Ostrow. Background Dysarthria is associated with decreased quality of life in people with ALS. Monitoring progressive changes in speech is challenging due to the complex impact of ALS on multiple speech subsystems. Quantitative measures of dysarthria could be useful as ALS clinical trial outcome measures, providing clinically meaningful insight into the progression of bulbar symptomatology. Listener Effort (LE) is a clinician rated feature, scored from 0-100, describing how much effort a healthy listener needs to exert to understand a dysarthric speaker. Listener Effort is inherently clinically meaningful, can be reliably rated by Speech-Language Pathologists (SLPs) listening to recorded speech samples, changes quantitatively over time in ALS, and is highly reproducible. READ MORE Listener effort measures clinically meaningful change of dysarthria in amyotrophic lateral sclerosis Indu Navar Bingham, Raquel Norel, Esteban G. Roitberg, Julián Peller, Marcos A. Trevisan, Carla Agurto, Michele Merler, Diego E. Shalom, Felipe Aguirre, Iair Embon, Alan Taitz, Donna Harris, Amy Wright, Katie Seaver, Stacey Sullivan, Jordan R. Green, Lyle W. Ostrow, Ernest Fraenkel, James D. Berry Abstract Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that can cause progressive bulbar dysfunction and dysarthria, resulting in reduced quality of life. Quantitative motor speech analysis can identify features of dysarthria that worsen with ALS progression but are not, inherently, clinically meaningful. Listener effort is a clinician rated feature describing how much effort the listener needs to exert to understand the dysarthric speaker. This study investigated whether listener effort could act as a clinically meaningful measure of ALS dysarthria that could be used as an outcome measure in clinical trials. READ MORE Reliable monitoring of respiratory function with home spirometry in people living with amyotrophic lateral sclerosis Julian Peller, Marcos A. Trevisan, Gaston Bujial, Felipe Aguirrel, Diego E. Shalom, Alan TaitzIt, Stephanie Henzel, Silviya Bastola, Jason Osik, Ryan A. Shewcraft, Peng Jiang, Joel Schwartz, Terry Heiman-Patterson, Michael E. ShermanS, Matthew F. Wipperman, Oren Levy, Guofa Shou, Karl A. Sillay, Lyle W. Ostrow, Ernest Frankel, James D. Berry, Indu Navar Bingham, Esteban G. Roitberg Introduction Monitoring respiratory function is essential for assessing the progression of Amyotrophic Lateral Sclerosis (ALS) and planning interventions. Remote pulmonary function testing offers a promising alternative to in-clinic visits by reducing participant burden and enabling more frequent and accessible measurements. Methods: To evaluate the feasibility and reliability of home-based spirometry in ALS, we built on the Radcliff Study, a fully remote, longitudinal, exploratory study conducted at home by 67 people with ALS (pALS). After an initial training period, participants managed their coaching autonomously, performing spirometry independently or requesting assistance from trained personnel. READ MORE Clinical assessment and interpretation of dysarthria in ALS using attention based deep learning AI models Michele Merler, Carla Agurto, Julian Peller, Esteban Roitberg, Alan Taitz, Marcos A. Trevisan, Indu Navar, James D. Berry, Ernest Fraenkel, Lyle W. Ostrow, Guillermo A. Cecchi and Raquel Norel Abstract Speech dysarthria is a key symptom of neurological conditions like ALS, yet existing AI models designed to analyze it from audio signal rely on handcrafted features with limited inference performance. Deep learning approaches improve accuracy but lack interpretability. We propose an attention-based deep learning AI model to assess dysarthria severity based on listener effort ratings. Using 2,102 recordings from 125 participants, rated by three speech-language pathologists on a 100-point scale, we trained models directly from recordings collected remotely. Our best model achieved R2 of 0.92 and RMSE of 6.78. Attention-based interpretability identified key phonemes, such as vowel sounds influenced by ‘r’ (e.g., “car,” “more”), and isolated inspiration sounds as markers of speech deterioration. This model enhances precision in dysarthria assessment while maintaining clinical interpretability. By improving sensitivity to subtle speech changes, it offers a valuable tool for research and patient care in ALS and other neurological disorders. READ MORE 2024 NEALS Conference A Novel, Self-Administered, App-Based Assessment of Motor Movement in ALS Christina Fournier (Emory University), Indu Navar (EverythingALS), Natalia Luchkina (EverythingALS), Christian Rubio (EverythingALS), and Stephanie Henze (EverythingALS) Abstract This study presents the ALS Motor App, a self-administered, AI-supported tool designed to remotely assess motor movement in individuals with ALS. The app evaluates 46 motor tasks across bulbar, upper extremity, trunk, and lower extremity regions through written descriptions and animated visuals. Users record their ability to perform tasks, with results stored in a central repository for review. Initial beta testing has refined the app using feedback from clinicians and people with ALS (pALS), with the tool now available on Google Play and the Apple Store. The app offers enhanced data granularity and accessibility, supporting adaptive algorithms that track motor decline and predict future care needs. Future work will validate the tool against standardized ALS measures and explore its reliability and predictive power for clinically relevant milestones. READ MORE medRxiv Listener effort quantifies clinically meaningful progression of dysarthria in people living with amyotrophic lateral sclerosis Indu Navar Bingham, Raquel Norel, Esteban G. Roitberg, Julián Peller, Marcos A Trevisan, Carla Agurto, Diego E. Shalom, Felipe Aguirre, Iair Embon, Alan Taitz, Donna Harris, Amy Wright, Katie Seaver, Stacey Sullivan, Jordan R. Green, Lyle W. Ostrow, Ernest Fraenkel, James D. Berry Abstract Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that causes progressive muscle weakness. Progressive bulbar dysfunction causes dysarthria and thus social isolation, reducing quality of life. The Everything ALS Speech Study obtained longitudinal clinical information and speech recordings from 292 participants. In a subset of 120 participants, we measured speaking rate (SR) and listener effort (LE), a measure of dysarthria severity rated by speech pathologists from recordings. LE intra- and inter-rater reliability was very high (ICC 0.88 to 0.92). LE correlated with other measures of dysarthria at baseline. LE changed over time in participants with ALS (slope 0.77 pts/month; p<0.001) but not controls (slope 0.005 pts/month; p=0.807). The slope of LE progression was similar in all participants with ALS who had bulbar dysfunction at baseline, regardless of ALS site of onset. LE could be a remotely collected clinically meaningful clinical outcome assessment for ALS clinical trials. READ MORE 2024 NEALS Conference Machine Learning Model Predicts Listener Effort in ALS-related Dysarthria Indu Navar (EverythingALS), Esteban G. Roitberg (Universidad Nacional de San Martín and EverythingALS), Julian Peller (Humai and EverythingALS), Marcos A. Trevisan (Universidad de Buenos Aires and CONICET), Diego E. Shalom (Universidad de Buenos Aires and CONICET), Felipe Aguirre (EverythingALS), Gastón Bujía (EverythingALS), Iair Embon (EverythingALS), Alan Taitz (SRI International), Raquel Norel (IBM Research), Carla Agurto (IBM Research), Donna Harris (Temple University), Amy Wright (EverythingALS), Katie Seaver (EverythingALS), Stacey Sullivan (EverythingALS), Jordan R. Green (MGH Institute of Health Professions), Lyle W. Ostrow (Temple University), Ernest Fraenkel (MIT), and James D. Berry (Massachusetts General Hospital and Harvard Medical School) Abstract This study applies machine learning (ML) to predict Listener Effort (LE), a key measure of speech impairment in ALS-related dysarthria. Using 2,124 speech recordings from 125 participants (105 pALS, 20 controls) and manual LE ratings by Speech-Language Pathologists (SLPs) with excellent inter-rater reliability, ML models demonstrated robust predictive capabilities. A simple Lasso regression model achieved an R² of 0.83, with Speaking Rate and Whisper Confidence identified as the two most significant features. Advanced ensemble models achieved even higher accuracy (R² of 0.94). These findings highlight the potential of ML in quantifying LE, offering scalable and reliable tools to track ALS progression and evaluate therapeutic interventions. READ MORE 2024 MND Conference A Novel Web App-Based Assessment of Cognition in ALS Using Speech Indu Navar (EverythingALS), Raquel Norel (IBM), Carla Agurto (IBM), Guillermo A. Cecchi (IBM), Bo Wen (IBM), Natalia Luchkina (EverythingALS), Stephanie Henze (EverythingALS), Alan Taitz (EverythingALS), Ahmad Al Khleifat (King’s College London), James Berry (MGH), Sharon Abrahams (University of Edinburgh), and Ammar Al-Chalabi (King’s College London) Abstract This study introduces a web app-based assessment for evaluating cognition in individuals with ALS, inspired by the Edinburgh Cognitive and Behavioral ALS Screen (ECAS). Data from 108 participants, including people with ALS and controls, were analyzed, with a subset completing repeated evaluations. Speech samples collected through picture description tasks were processed using Whisper Open AI for transcription, extracting acoustic and linguistic features. Linear regression models achieved Spearman correlations between 0.32 and 0.51 for predicting cognitive scores. The results highlight the potential of digitized, speech-based cognitive assessments as scalable, accessible alternatives to traditional methods, especially for individuals in remote or underserved areas. Future work will expand cohort size and refine methodologies to enhance accuracy and generalizability. READ MORE 2024 A Roadmap to Incorporating Digital Endpoints in Clinical Trials 2024-2025 Authors and Contributors EverythingALS Industry Consortia members, EverythingALS Scientific Advisory Board, regulatory advisors, and members of the ALS community, including pALS (people with ALS) and cALS (caregivers of people with ALS). The collaborative effort included input from biopharmaceutical professionals, clinicians, technology developers, and advocacy representatives. The acknowledgment section specifically highlights the ALS community's vital role in shaping the research and insights presented. Objective This white paper advocates for the integration of digital health technologies (DHTs) into ALS clinical trials to enhance efficiency, accessibility, and patient-centricity. Traditional endpoints in ALS trials are burdensome and often lead to high attrition and prolonged durations. By leveraging DHTs, trials can enable continuous, remote, and quantitative patient monitoring, thus reducing bias, improving retention, and broadening accessibility. The roadmap outlined emphasizes interdisciplinary collaboration, agile methodologies, and regulatory alignment to optimize the clinical trial experience for both pALS and cALS. These efforts aim to accelerate innovation, improve disease tracking, and foster a participant-centered research paradigm for ALS care and therapeutics. READ MORE 2024 Harnessing Remote Speech Tasks for Early ALS Biomarker Identification Carla Agurto (IBM), Michele Merler (IBM), Esteban G. Roitberg (EverythingALS), Alan Taitz (formerly EverythingALS, now at SRI International), Marcos A. Trevisan (Universidad de Buenos Aires, CONICET), Diego E. Shalom (Universidad de Buenos Aires, CONICET), Julian Peller (EverythingALS), Lyle W. Ostrow (Temple University), Indu Navar (EverythingALS), Ernest Fraenkel (MIT), James Berry (MGH), Guillermo A. Cecchi (IBM), and Raquel Norel (IBM) Abstract This study investigates acoustic biomarkers for the early detection and monitoring of Amyotrophic Lateral Sclerosis (ALS). Using a dataset of 6,276 speech sessions from 291 participants, including 135 pALS, acoustic features were extracted via OpenSMILE and analyzed with machine learning classifiers. Results show up to 90% AUC in distinguishing ALS stages and 66% AUC for early detection. These findings highlight the potential of speech tasks as biomarkers to improve early diagnosis, track progression, and enhance the understanding of ALS READ MORE ISPOR 2023 Real-World Treatment Preferences Among People Living with ALS: A Discrete Choice Experiment Biogen, Cambridge, MA Trinity Life Sciences, Waltham, MA NEALS Consortium, MA, IBM Research, Yorktown Heights, NY EverythingALS, Seattle, WA Objective Quantitatively assess which treatment attributes are most important to people living with amyotrophic lateral sclerosis (ALS; pALS) in the United States (US) when making treatment decisions. Through direct and indirect assessment of preference, pALS indicated a desire for efficacious treatment options that improve physical functioning and survival. READ MORE 2023 IEEE International Conference on Digital Health (ICDH) Remote Inference of Cognitive Scores in ALS Patients Using a Picture Description Carla Agurto (IBM), Guillermo Cecchi (IBM), Bo Wen (IBM), Ernest Fraenkel (MIT), James Berry (MGH), Indu Navar (EverythingALS) and Raquel Norel (IBM) Abstract In this paper, we focused on another important aspect, cognitive impairment, which affects 35-50% of the ALS population. In an effort to reach the ALS population, which frequently exhibits mobility limitations, we implemented the digital version of the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) test for the first time. READ MORE October 2023 Muscle and Nerve Identifying amyotrophic lateral sclerosis through interactions with an internet search engine Elad Yom-Tov (Microsoft Research) , Indu Navar (EverythingALS), Ernest Fraenkel (MIT) , James D. Berry (MGH) Microsoft Research, Israel EverythingALS, Seattle, WA MIT, Cambridge, MA, MGH, Harvard, MA Abstract We identified 285 anonymous Bing users whose queries indicated that they had been diagnosed with ALS and matched them to 1) 3276 control users and 2) 1814 users whose searches indicated they had ALS disease mimics. We tested whether the ALS group could be distinguished from controls and disease mimics based on search engine query data. Finally, we conducted a prospective validation from participants who provided access to their Bing search data. The model distinguished between the ALS group and controls with an area under the curve (AUC) of 0.81. READ MORE AMIA 2022 Annual Symposium ALS Community Pressing Issues: Lessons from a Survey A. Anvar (EverythingALS), J. Berry (MGH) , E. Fraenkel (MIT), I. Navar (EverythingALS), G. A. Cecchi (IBM), R. Norel (IBM) EverythingALS, Seattle, WA MGH, Cambridge, MA MIT, Harvard, Cambridge, MA IBM Thomas J. Watson Research Center, Yorktown Heights, NY Abstract We gathered survey data to identify the unmet needs expressed by Amyotrophic Lateral Sclerosis (ALS) patients, caregivers, and advocates. Natural Language Processing was used to summarize free text data. Identified needs, named anchor topics were selected manually from the data. Text embedding was used to score participant answers to anchor topics. Despite a broad range of opinions among cohorts, we detected pain control, better access to information and ALSFRS-R alternatives as important ALS community issues. Natural Language Processing (NLP) and Artificial Intelligence (AI) was used to analyze the unstructured text data to obtain a deeper understanding of respondents’ answers. READ MORE 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