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Careers Join us to help everyone impacted by ALS participate in Citizen-Driven Research and benefit from Open Innovation. EverythingALS offers satisfying careers for people ready to bring their talent and skills to the fight of finding a cure for ALS. We also offer critically important volunteer opportunities that empower all kinds of people to share their unique gifts to help drive our mission forward Boston Area, Remote Community Engagement Manager Reporting to the Executive Director, we are seeking a Community Engagement Manager with excellent project management and digital communications skills to join our dynamic team. This role is crucial in driving our discovery and engagement with our.. Read More

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. 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

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 * The Speech Study to advance drug trials The Radcliff : Multi-disciplinary Study The ALS Gene Carrier Study All of the above 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

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

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