Search Results

EverythingALS Community achived extraordinary impact in 2022 We couldn't have done this without our partnerships, research and team! 🤍 Wishing you and your family a happy 2023 filled with hope, health, and happiness. We’re not just busy, our work together is impacting the progress in ALS – with more than 5,000 ALS families in our community, 200,000+ people access information on social media across the globe and 1,300+ participants in the research studies. 2022 was another great year for our amazing EverythingALS community. All of this is only possible because of your support and dedication to our mission to advance the use of digital technologies to accelerate ALS drug discoveries, redefine healthcare and improve the lives of people with ALS. Whether you attended EverythingALS Talk , participated in the research , attended the roundtable , or engaged in any other way, you contributed to #EverythingALS success. Together, we make it possible for 2023 to be the best year yet in our mission to advance the field of digital medicine and improve the lives of people with ALS. Thank you for all that you do. Indu Navar, Founder & CEO

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

eGift Card $25 Amount $25 $50 $100 $150 $200 Quantity Buy Now

Austen Speech Study EverythingALS is building an active, growing citizen research participants to draw from the community of over 7,000 People with ALS and Caregivers who collaborate directly with leading minds at eminent research institutions, jointly executing IRB-approved studies with EverythingALS for digital biomarker research to detect subtypes of ALS progression, early diagnosis and for remote patient monitoring. Aims: Collect Data Create Objective Measures Creation of a robust, longitudinal data collection - DEI achieved Fostering engagement Data & Research Output: Cohort characteristics 1200 HOURS OF DATA 7000 SESSIONS 850 PARTICIPANTS Citizen Driven Rapid Recruitment EverythingALS implemented a grassroots effort to recruit participants from our patient support community. With a reach that expands to 7,000 email subscribers, over 300,000 YouTube viewers, and 5,000 total attendees to our weekly Fireside Chats and ALS Expert Talk Series presentations, our organic method of recruitment is built on the solid reputation EverythingALS.org has secured by gaining patient trust as a leader in the research field. The membership comprises people with ALS in different stages or diagnoses, their caregivers, and healthy research participants (controls). Broad Geographic Distribution In collaboration and consultation with people with lived experiences with ALS (pALS and cALS) and in collaboration with leading clinical research experts and clinicians treating people with ALS, EverythingALS was convinced that the gaps could be filled by taking the tests out of the clinic and taking them to the participants, in their own homes. This new methodology, rooted in remote monitoring, sensor-driven data capture, and human experience support, hopes to foster engagement and collaboration between pALS, caregivers, researchers, and drug companies through an open-innovation platform approach to further studies using other digital data capture modalities beyond speech. This allowed for pALS from all over the country to contribute to the Austen Study. Ethnic Inclusion Access and Equity Remote study engagement, driven by diverse content marketing and awareness-raising of the EverythingALS mission and Citizen-driven research, has consistently delivered greater participant diversity compared with natural history study demographics performed on-site. However, recruitment and participation among African Americans remain lower than desired to achieve representation targets among all major ethnicities. EverythingALS is committed to improving this representation through direct feedback and guidance from black and African American participants, as well as collaborating with key stakeholders in engaging African American potential participants.” Request access to the Open Data Submit

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

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.

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

The EverythingALS Research Network comprises of Pharma and biotech companies, neurologists, AI and data scientists, technology companies, regulators, and people with ALS. Together, we drive forward the discovery and implementation of ALS clinical assessments and digital biomarkers in clinical trials through collaborative efforts. Join our Research Network and help drive profound advancements in ALS research.

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

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

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

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