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

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. Everything ALS Request to Delete Account and Personal Data If you wish to delete your account and remove your personal data from our system, please follow these simple steps: Fill Out the Form: Provide the necessary details in the form. Submit the Form: Once you’ve completed the form, submit it to initiate the deletion process. Upon receiving your request, our team will promptly process it. We will permanently delete all your data from our records.Please note that this action is irreversible, and you will no longer be able to access your account or any associated data after deletion. Delete Account Form First Name Last Name Email that you used to create an Account on the App Mobile Number Reason for Account Deletion Submit

Future Events Expert Talk Series Fireside Chats Chloroviruses in ALS with Dr. Gary Pattee Wed, Jan 07 Virtual Event More info RSVP To Kill a Motor Neuron: Model systems in the lab to understand ALS in the clinic with Dr. Stephen Kolb Wed, Jan 21 Virtual Event More info RSVP

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

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

Looking forward to even more productive 2022 Download 2021 Year End Newsletter Looking back at 2021 & we have you to thank!

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

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

Pickle Ball for All in Seattle on 16-17th Sept 2023 PickleBall for all in Seattle! EverythingALS and Seattle Metro PickleBall in conjunction with the City of Seattle and Seattle Parks Foundation will be hosting a "Pick leBall for All" street festival downtown September 16-17, 2023 Register here Join for a fun day! See more information below: There will be 10 pickleball courts Live music Beer garden Food trucks We are thankful for generous offer for the People with ALS and Families to participate with reserved courts. Astria PickleBall is sponsoring the paddles. If you and your family are interested in attending --- as it is a short notice --- Please register and/or email info@everythingals.org ASAP. We will put you in the VIP list. September 16-17, 2023 Downtown Seattle Intersection of 5th Avenue and Vine street, (under the monorail) between Denny and Taylor Register here

Harvard medical, MGH, Temple University, IBM, MIT EVERYTHING ALS Scientific Advisory Board James Berry, MD, MPH, is a Winthrop Family Scholar in ALS Sciences at Massachusetts General Hospital (MGH); Director, MGH Neurological Clinical Research Institute; and Chief, Division of ALS and Motor Neuron Diseases. In these roles, he provides care for people with ALS and works as an ALS researcher designing, overseeing and implementing trials focused on the identification of markers of ALS in digital, blood and spinal fluid. He also collaborates broadly with researchers around the globe on these biomarker efforts. As Chair of the DOD ALS Research Programmatic Panel , he led recent efforts to develop and refine funding mechanisms to help novel treatments move though the drug development pipeline, prioritize biomarker development, and encourage open data and resource sharing. He also Directs an ALS Postmortem Tissue Research Core in collaboration with the CDC National ALS Registry which integrates clinical, pathological, and genomic data with autopsy tissue samples and slides – all made broadly available to researchers around the world. Ernest Fraenkel, PhD, is a Professor of Biological Engineering at MIT, where he oversees a laboratory developing computational and experimental approaches to search for new therapeutic strategies for diseases, especially diseases of the central nervous system. Their work uses machine learning, AI and bioinformatics to integrate molecular, clinical and behavioral data to understand how diseases develop and to suggest new directions for drug development.

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

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