Search Results

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

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

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

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

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 01:30:15 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 Play Video Play Video 01:08:55 Tracking the Invisible: How Science Is Revealing ALS's Environmental Roots with Dr. Eva Feldman For this Expert Talk, we were honored to host Dr. Eva Feldman, a world-renowned neurologist at the University of Michigan. Dr. Feldman shared groundbreaking insights into the environmental roots of ALS (Amyotrophic Lateral Sclerosis) and discussed the following: 🔬 The role of genetic mutations and advances in gene therapy tools 🌱 The concept of the exposome – and how pesticides, pollutants and lifestyle choices may impact ALS risk 🧬 The latest research on genetic testing and environmental risk factors ♻️ The science behind DNA methylation, detoxification treatments, and whether their effects can be reversed Timestamps for this video: 00:00:00: Welcome and introductions 00:02:09 Start of Dr. Feldman's Presentation 00:08:12 ALS Prevalence and Environmental Factors 00:13:50 ALS Polygenic Risk Score Development 00:20:31 Environmental Risk Factors for ALS 00:40:56 Research Summary and Next Steps 00:45:09 Audience Q&A This talk is a must-watch for patients, caregivers, researchers, and advocates who want to understand how genetics and the environment intersect in ALS research — and where the science is headed next. 📢 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 Play Video Play Video 01:08:40 Barriers to ALS Therapy Development: Forging a Path Through with Dr. Shafeeq Ladha For this Expert Talk, we were honored to host Dr. Shafeeq Ladha, one of the nation's leading voices in ALS research and care. Dr. Ladha presented on the topic "Barriers to ALS Therapy Development: Forging a Path Through." He discussed the disease's heterogeneity and the importance of biomarkers in clinical trials. The group discussion went on to explore various research approaches, including the use of neurofilament as a biomarker, the potential of AI in analyzing large datasets and the importance of improving clinical trial designs and preclinical models. In addition, Dr. Ladha answered several questions at the end of the talk. 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 ► Twitter: https://x.com/everything_als ► 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 Play Video Play Video 01:28:31 Is ALS a recoverable disease? Insights from Dr. Brett Morrison For this Expert Talk, we were honored to host Dr. Brett Morrison, an associate professor of neurology at Johns Hopkins University. Dr. Morrison presented on the topic "Is ALS a recoverable disease? Insight from Tofersen and the role of peripheral nervous system plasticity." He discussed the current state of ALS treatments, highlighting the approved disease-modifying therapies Riluzole and Edaravone, while emphasizing the need for further research. Dr. Morrison also mentioned ongoing clinical trials and his interest in understanding the immune system's role in peripheral nerves for potential new treatments. In addition, he answered several questions at the end of the talk. Related links: Speech Study: https://www.everythingals.org/speechp... The ALS Gene Carrier Study: https://www.everythingals.org/asympto... 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 ► Twitter: https://x.com/everything_als ► 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

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

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

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. LOGIN > Click here to Register or Login if you are in the study Advancing the Diagnosis and Prognosis of ALS from Speech WE ARE LOOKING FOR Individuals Diagnosed or Probable with Amyotrophic Lateral Sclerosis (ALS) and Healthy Participants to help give 5 speech r ecordings with total 75 minutes over 5 months Our IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology and speech data (audio, video). By participating in this study, you will contribute to a growing large ALS dataset and further advance current knowledge relating to the decline in speech due to ALS while also improving the performance of this technology. The approach will be to perform analysis of online audio/video recordings: The study activity involves the use of Modality.ai Inc.’s web-based software that collects speech audio and video data and then uses AI and machine learning algorithms to analyze facial and speech metrics. Data collection can be conducted anywhere you feel comfortable (e.g., your home). One session per month over 5 months, and each session will last approximately fifteen minutes. Meet Amazing Vivian Rojas Diagnosed with ALS in 2018 If you are interested in the study, please contact us Your connection to ALS I am interested to participate in * Required The Speech Study to advance drug trials The 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 Breathing Device CPAP Other Cane Rollator Walker Wheelchair Other What is your Shoe size? What is your T-shirt size? Women Men Country Submit Protocol Number: 2020-06-PI42 | Sponsor: Peter Cohen Foundation Contact Us Email: speech@everythingals.org

Harvard medical, MGH, Temple University, IBM, MIT EVERYTHING ALS Scientific Advisory Board James Berry, MD, MPH Neurologist at Massachusetts General Hospital 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. Raquel Norel, PhD Research Staff Member at IBM Digital Health Raquel (Kely) Norel, PhD, is a Research Staff Member in the Computational Biology Center at the IBM T. J. Watson Research Center. At the Digital Health Lab, Dr. Norel and team implements automatic language-based analysis for neuropsychiatric and neurodegenerative assessment by using machine learning, signal processing and natural language processing. Their work aims to gain insight in disease detection and progression. Ernest Fraenkel, PhD Professor at Massachusetts Institute of Technology 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. Lyle Ostrow, MD, PhD ALS Clinician-Scientist at Temple University 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.

Past Events Palliative Care for ALS - What is it? How can it help? How to access it? with Dr. Kara Bischoff Virtual Event Details Updates on ALS Clinical Trials from Regeneron and VectorY Virtual Event Details Fireside Chat with Pathfinders Oct 22, 2025 Virtual Event Details Signals from The Outer Limits: What I've Learned from Slow Progressors and ALS Reversals, and How I Am Trying To Make... Virtual Event Details ALS BioBanking in the 21st Century with Dr. Brent Harris Virtual Event Details Fireside Chat with Pathfinders Sept 24, 2025 Virtual Event Details Genetics and ALS: What New Discoveries Mean for You and Your Family with Ms. Jennifer Roggenbuck Virtual Event Details Tracking the Invisible: How Science Is Revealing ALS's Environmental Roots with Dr. Eva Feldman Virtual Event Details Fireside Chat with Pathfinders August 27, 2025 Virtual Event Details Barriers to ALS Therapy Development: Forging a Path Through with Dr. Shafeeq Ladha Virtual Event Details Is ALS a recoverable disease? Insight from Tofersen and the role of peripheral nervous system plasticity Virtual Event Details Fireside Chat with Pathfinders July 30, 2025 Virtual Event Details Breathing in ALS: Insights from a Clinical Research Program for Respiratory Care in ALS with Dr. Jason Ackrivo Virtual Event Details Building the Motor Pathway In Vitro to Understand ALS with Dr. Arens Taga Virtual Event Details Fireside Chat with Pathfinders July 2, 2025 Virtual Event Details The ALS Gene Carrier Study : Help us learn about detecting early motor and speech changes in ALS with Dr. James Berry Virtual Event Details Let's Stay in Touch! Preserving nerve-muscle contacts to battle ALS with Dr. Richard Robitaille Virtual Event Details Nutrition & EverythingALS App Office Hours Virtual Event Details Load More

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.

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