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

EverythingALS 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. Nutrition & EverythingALS App Office Hours JOIN US ! Widget Didn’t Load Check your internet and refresh this page. If that doesn’t work, contact us. Our Hosts Terry Heiman-Patterson, MD Professor of Neurology, Lewis Katz School of Medicine at Temple University, Director of Center for Neurodegenerative Diseases, MDA/ALS Center of Hope Dr. Heiman-Patterson is Professor of Neurology at the Lewis Katz School of Medicine at Temple University where she is Director of the Center for Neurodegenerative Diseases and for the MDA/ALS Center of Hope. Her research has focused on ALS and includes both clinical and laboratory interests. She has been principal investigator for more than 30 trials in amyotrophic lateral sclerosis (ALS). Her clinical research is directed at extending survival and improving the quality of life including application of technologies to enable independence and optimizing respiratory interventions. In the laboratory, Dr. Heiman-Patterson has worked with murine models of ALS to identify genetic modifiers of disease that can be translated to human disease. She has authored or co-authored numerous papers, abstracts and book chapters on ALS and related motor neuron diseases. She is president and co-founder of the ALS Hope Foundation, a nonprofit committed to making a difference to people living with ALS, she has served as Co-Chair of the Northeast ALS (NEALS) Consortium and has served on multiple grant review committees including the Congressionally Directed Military Research Program. She is committed to patient care and education actively participating in the Clinical Research Learning Institute to train PALS to be Research Advocates. She is a member of the American Academy of Neurology and the American Neurological Association. Julie Lichtman, RD, LDN Registered Dietician Julie Lichtman, RD, LDN graduated from University of Massachusetts in 2013. Julie has dedicated her career to helping individuals achieve their health and wellness goals through personalized diet interventions and helping individuals rebuild their relationship with food. Her past experience includes working at Inglis House as a clinical dietitian and starting a private practice focusing on mindfulness and medical nutrition therapy. She is driven by her genuine desire to make a positive impact on people’s lives through nutrition. Natalia Luchkina Research Lead EverythingALS Anusha Rao Student Ambassador EverythingALS Stephanie Henze Design and Strategy EverythingALS Silviya Bastola Clinical Project Research Manager EverythingALS

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. Fireside Cha t JOIN US J oin us for an opportunity to be with caring people who w ish to chat, listen, share, and learn. Fireside Chat with Pathfinders Jan 14, 2026 When Jan 14, 2026, 7:00 PM EST Where Virtual Event Register Now Our Hosts McFinn Lovere ALS Advocate & Pathfinder McFinn Lovere was diagnosed with ALS in 2006 at the UCSF, he was only able to move his head and two fingers. His spirituality and team of caretakers gave him HOPE and he is documented as the 42nd "ALS Reversal" by Dr.Bedlack. At EverythingALS, he aims to bring meaning, hope, and an uplifting atmosphere to a community that he knows very intimately and one that needs it most. His email address is mcfinn@everythingals.org Kathleen McCallum Pathfinder Kathleen McCallum, and for the past two years, I have been helping my friend Willard, who was diagnosed with ALS in 2022. There is hope, and if I can help provide it for you, please contact me at kathleen@everythingals.org Faith Oremland Pathfinder Faith Oremland's son was diagnosed with ALS in January 2022. If you are dealing with the challenges of being a parent to a child with ALS, issues with family communications, and learning how to live positively in the face of ALS, please get in touch with me at faith@everythingals.org Joe Redmond Pathfinder Joe Redmond was diagnosed with ALS in 2012. If I can make your journey any easier, or if you have any questions, let me help you find answers. My hope is to be the resource you need. Reach out to me at joe@everythingals.org Monica Martinez Pathfinder Monica Martinez was diagnosed with ALS in 2023. Welcome to Pathfinders! We are here to support, guide, and walk with you on this journey. You are not alone! WE GOT THIS! TOGETHER WE ARE BETTER THAN ALS! Reach out to me at monica@everythingals.org Doug Hill Pathfinder Doug Hill was diagnosed with bulbar onset ALS in January of 2024. ALS doesn’t define me; it has redefined me. In fact, it makes me stronger, as a Pathfinder, I am an active participant and advocate in the ALS community, and I would love to connect with you to share what I’ve found and how it has helped me in this journey. Reach out to me at doug@everythingals.org Cathy Cummins Pathfinder Cathy Cummins was diagnosed with ALS in 2008. Chiropractor, professor, and former elite athlete, now living with ALS and dedicated to guiding others through resilience and adaptation. As a Pathfinder, I share insights from my healing journey to inspire strength and community. Reach out to me at cathy@everythingals.org Willard Blackwell Pathfinder Willard Blackwell was diagnosed with ALS in May of 2022. A professional singer and musician leading the Gator Nation Band. Please get in touch with me at willard@everythingals.org John Hudacek Pathfinder John Hudacek was diagnosed with ALS in November 2021. He is a slow progressor. Now is the time to discover the hidden strength in each of us. I am honored to hold your hand on this journey, reach me at john@everythingals.org Michael Montemayor Pathfinder Mike Montemayor was diagnosed with ALS in Julyof 2003. I hope to be able to help others with ALS as well. God Bless!! mike@everythingals.org Shawn Penno Pathfinder Shawn Penno was diagnosed with ALS in September 2023. He has been a care aide for 25 years, 2 in long-term care and the rest in the Community. Please reach out if you need someone to 'vent' to, help with problems, or someone to talk to alleviate the isolation shawn@everythingals.org Siddu Tummala Pathfinder Siddu (Sridhar) Tummala is the CEO of Cresido Analytics. Reach out to me at siddu@everythingals.org Anthony (Tony) Martin Varela Pathfinder Anthony (Tony) Martin Varela was diagnosed with ALS in April of 2023. I keep a positive outlook as much as I can, but staying busy seems to keep my mind off of it and works the best. I am looking forward to helping in any way I can. Reach out to me at tony@everythingals.org Ivonne Vaughn Pathfinder Ivonne Vaughn was diagnosed with ALS in January of 2025. My goal is to help and encourage those with ALS (pALS), those caring for ALS loved ones (cALS) and to share the HOPE I have in my ALS journey. We all need good listeners in our lives. As a Pathfinder, I am here to listen, support, and encourage you. Reach out to me at ivonne@everythingals.org .

EverythingALS in the News Publications Click here to VIEW our publications ALS News Today (50,782 UMV) Esteban Dominguez Cerezo shared information about the EALS app on September 4th. https://alsnewstoday.com/news/new-everythingals-app-version-broader-als-community/ EverythingALS Launches New Mobile App EverythingALS Launches New Mobile App: A Comprehensive Research and Life Navigation Tool for the ALS CommunityHere is the link to the article - https://www.globenewswire.com/en/news-release/2024/08/26/2935526/0/en/EverythingALS-Launches-New-Mobile-App-A-Comprehensive-Research-and-Life-Navigation-Tool-for-the-ALS-Community.html NEW MAY 2024 EverythingALS CEO Indu Navar and Chairman Bill Nuti talk ALS awareness month with Jim Cramer Read more MARCH 2024 EverythingALS Launches the Vision 2030 AI Hub : Charting the Path to an ALS Cure and Advancing Neurodegenerative Disease Research Vision 2030 will utilize advanced technologies and an innovative operating model for research and drug development Read more WBRC-TV (FOX Birmingham, AL) Indu Navar, CEO EverythingALS, was interviewed by Producer Kelly Garrett, live on May 30th. Here is the link to the interview - https://www.wbrc.com/video/2024/05/30/indu-navar-als-awareness-month/ Spectrum Bay News 9 (Tampa, FL) Indu Navar, CEO EverythingALS, and Melissa Eichman along with a local patient, Paul and Martha (Paul's wife) did an interview with Melissa Eichman. The interview segment aired on May 29th, 2024. Here is the link to the interview - https://baynews9.com/fl/tampa/news/2024/05/28/als-speech-study- WERC-FM (Birmingham, AL) Indu Navar, CEO EverythingALS, was interviewed by Producer John Mountz to discuss the studies and how residents can get involved, live on May 28th. Here is the link to the interview - https://www.iheart.com/podcast/139-alabamas-morning-news-with-28158320/episode/indu-navar-reminds-us-that-may-180480709/ JUNE 2023 AI could provide breakthrough for early diagnosis of rare diseases For people living with rare diseases, one of the major challenges is being able to receive a rapid and accurate diagnosis. Often the process takes years, but Ben Hargreaves finds that there is a new wave of research utilising AI that could change this. Read more JUNE 2023 Could AI help diagnose diseases like ALS more quickly? BOULDER, Colo. (KDVR) — Michael Robinson was diagnosed with amyotrophic lateral sclerosis, or ALS, almost eight years ago when he was just 45 years old. “I was late for a meeting and went to go run and couldn’t get my right leg to move, and being a physician and knowing what I know, my immediate thought was I think I have ALS,” the Boulder resident said. Read more JUNE 2023 EverythingALS: Searching for a Cure with AI EverythingALS, a patient-focused non-profit, is currently conducting the world's largest AI-powered ALS study. John Howell is joined by Indu Navar, Founder of EverythingALS, to discuss the details of the study and history behind the non-profit. The study is still taking participants, both those who have ALS and those who don't. For more information, visit everythingals.org. Read more JUNE 2023 Non-profit Conducts Studies to Help with ALS "The way I look at it, as technology is here today. We can make an impact to people with ALS today. So, what we are doing is we're looking at these progression markers and applying this to clinical trials that's happening today. So, we work with about 11 pharma companies that partnered with us on this initiative," Founder and CEO of EverythingALS Indu Navar said. Read more JUNE 2023 Everything ALS works to help doctors and families diagnose the disease faster While reflecting on the process that her family endured while her husband battled the disease, Navar says, "There is something called diagnosis fatigue. And it really creates a lot of very, very deep, deep sorrow and grief just going through the diagnosis because it is, I say, it's death by a thousand cuts." Read more JUNE 2023 Tech entrepreneur aims to use artificial intelligence to speed up diagnoses of ALS DETROIT LAKES — Using artificial intelligence and machine learning, a tech entrepreneur is going after the fatal disease of ALS – also known as Lou Gehrig's Disease. Read more JUNE 2023 Bringing Technology to ALS CARE Indu Navar, founder of EverythingALS, joins Amy & JJ. And, just in time for the Fargo walk. Read more APRIL 2023 "EverythingALS" joins Harvard, MIT and IBM for unique research EverythingALS founder Indu Navar joined Kyla Grogen to discuss the unique research they are conducting with Harvard, MIT, and IBM. Watch the clip to learn how recording your voice for 20 minutes a week could be the key to finding a quicker way to diagnose and treat ALS. Read more APRIL 2024 Listen Up: Emerging Vocal Biomarker Could Aid ALS Drug Development It’s been a disappointing spring for the amyotrophic lateral sclerosis community, with the Phase II failure of Sanofi and Denali Therapeutics’ candidate and Amylyx’s decision to pull Relyvrio from the market . But drugmakers are hopeful that the development and validation of novel biomarkers for the disease, including neurofilament, genetic markers and, more recently, speech, can help improve patient care and expedite the development of effective treatments. Read more MARCH 2024 Deciphering the cellular mechanisms behind ALS At MIT, Fraenkel works in the Department of Biological Engineering and co-directs the Computational Systems Biology graduate program. For the study of ALS, he and his collaborators at Massachusetts General Hospital (MGH), including neurologist and neuroscientist Merit Cudkowicz, were recently awarded $1.25 million each from the nonprofit EverythingALS organization. The strategy behind the gift, Fraenkel says, is to encourage MIT and MGH to increase their collaboration, eventually enlisting other organizations as well, to form a hub for ALS research “to break down barriers in the field and really focus on the core problems.” Read more MARCH 2024 A new way to detect ALS in patients ALS is a crippling disease that affects the nervous system. There is a new and easier way to detect ALS. ALS also known as Lou Gehrig’s disease, affects the nervous system by weakening muscles and ultimately paralyzes the patient. Indu Navar is the CEO and Founder of Everything ALS, she says there is a new effort to help ALS patients by using AI machine learning. Read more MARCH 2024 Citizen-Driven Research Aids Development Of Digital Biomarkers For ALS March 20, 2024 | When it comes to research on amyotrophic lateral sclerosis (ALS), every stakeholder—most especially patients—knows time is of the essence. From diagnosis to death, life expectancy from the debilitating neuromuscular disease can be two years or less. “The time people give us is currency,” says Indu Navar, founder of the nonprofit Peter Cohen Foundation operating as EverythingALS. Read more JANUARY 2024 Citizen-Driven Research Aids Development Of Digital Biomarkers For ALS When it comes to research on amyotrophic lateral sclerosis (ALS), every stakeholder—most especially patients—knows time is of the essence. From diagnosis to death, life expectancy from the debilitating neuromuscular disease can be two years or less. “The time people give us is currency,” says Indu Navar, founder of the nonprofit Peter Cohen Foundation operating as EverythingALS. Read more JANUARY 2024 Governor Hochul proposes historic $25m budget for ALS research in New York A groundbreaking moment in the search for a cure for ALS. Governor Hochul is looking to set aside a historic amount of money for ALS research in New York. She made the announcement in her budget address last week, but in this week's Wellness Wakeup, you'll see for the governor and many others, it's personal. Read more DECEMBER 2023 10 unexpected ways life changes when you become a family caregiver Some family caregivers go into it knowing that caring for a loved one is their fate, while others are unexpectedly thrust into it. But whether it’s expected or not, the family caregiving journey is rarely predictable, says Jody Gastfriend , a licensed clinical social worker, author and senior care consultant. Read more DECEMBER 2023 Slowing ALS with Speech: Study leverages IBM’s AI, creates digital biomarkers EverythingALS is working with clinical research stakeholders from IBM Research, Massachusetts Institute of Technology, and Harvard University in a longitudinal study focused on early disease detection based on patterns noted in audiovisual sessions. Read more OCTOBER 2023 Former tech executive leads nonprofit to help those with ALS Moving from tech entrepreneurship to caregiving was never a step Indu Navar expected to make, but this leap of faith turned out to be transformative. Today, she is making use of both skill sets as the CEO and founder of EverythingALS , a nonprofit patient-led advocacy group focused on creating digital biomarkers for early detection of ALS. Read more SEPTEMBER 2023 EverythingALS Announces Student Fellow Scholarship Awards and Expanded Student Ambassador Program aims to accelerate ALS Research SEATTLE, Sept. 27, 2023 (GLOBE NEWSWIRE) -- EverythingALS, a citizen science research organization dedicated to developing cure for ALS, announced today the Student Fellow Scholarship Awards and the expansion and continued enrollment of student Ambassadors program. Both programs are core pillars of the EverythingALS Care to Cure™ impact model. Read more SEPTEMBER 2023 Local ALS Association Chapter’s ‘Walk to Defeat ALS 2023’ held in Salem SALEM, Va. (WFXR ) — On Sept. 16, different ALS Association Chapters across the nation hosted their annual Walk to Defeat ALS. Our local chapter in Virginia was no different. The event was to raise funds for amyotrophic lateral sclerosis or Lou Gehrig’s disease. It’s a rare progressive neurological disorder that affects nerve cells in the brain and spinal cord resulting in weakened muscles. Currently, it’s a terminal diagnosis, meaning it has no cure. Read more AUGUST 2023 New $400,000 Grant Supports EverythingALS.org and Mass General Hospital (MGH) to Develop NeuroLens, a Digital Diagnostics technology initiative for early detection of Amyotrophic Lateral Sclerosis (ALS) SEATTLE--(BUSINESS WIRE )--EverythingALS today announced it has received $400,000 from ALS Finding a Cure® and The ALS Association to support studies for the identification of early digital diagnostic markers of ALS. Read more AUGUST 2023 Buffalo's ALS ambassador raising awareness ahead of weekend walk ORCHARD PARK, N.Y. (WKBW) — It is a disease that robs people of their ability to walk, talk, swallow and eventually breathe. ALS, often called Lou Gehrig's Disease most commonly afflicts people between the ages of 40 and 70. As many as 30,000 Americans have the disease at any given time. This Saturday, Buffalo will be hosting the Western New York Will Walk to Defeat ALS , at Delaware Park. Read more JULY 2023 Merging as EverythingALS, 2 nonprofits seek to better treatment “We firmly believe that the proliferation of non-profit organizations in this field leads to duplication of efforts, wasting precious time, money, and most importantly, lives,” Bill Nuti, CureALS’ founder and CEO and now chairman of the board of directors for Everything ALS, said in a joint press release . Read more JULY 2023 EverythingALS and CureALS Join Forces to Discover a Cure for ALS “They reflect our commitment to advancing research, improving diagnosis and therapies, leveraging data for analysis and technology integration, and ensuring comprehensive support for people living with ALS and FTD.” Read more JULY 2023 California tech company using artificial intelligence in ALS studies BOULDER, Colo. — More than 5,000 Americans are diagnosed with amyotrophic lateral sclerosis (ALS) each year, and roughly 600 people are here in Colorado, according to the Rocky Mountain chapter of the ALS Association. Read more JUNE 2023 Groundbreaking Nonprofit, CureALS Founded and Launched by Former NCR Chairman and CEO Bill Nuti to Eradicate ALS NEW YORK--(BUSINESS WIRE )--CureALS, a pioneering nonprofit organization dedicated to eliminating ALS (Amyotrophic Lateral Sclerosis) and other complex neurodegenerative diseases such as Alzheimer’s, Parkinson’s, and Frontotemporal Dementia, has officially launched today. Read more APRIL 2023 How AI and Facial Recognition Could Spot Stroke and Other Diseases Researchers are training computer algorithms in efforts to quickly identify ailments and speed treatment. Patients at Johns Hopkins Hospital who are suspected of having a stroke might get an unusual request from physicians: Can we film your face ? The doctors’ goal is to identify stroke patients by facial characteristics instead of waiting for brain scans or blood tests, helping speed both treatment and recovery. Read more APRIL 2023 Non-profit behind world's largest AI-powered ALS study ST. PETERSBURG, Fla. — ALS non-profit EverythingALS is using artificial intelligence and other technologies to help find a way to diagnose ALS and other neurological diseases faster and find a cure. It’s partnering with healthcare companies in the effort and conducting speech research to spot and track early signs of ALS. Read more APRIL 2023 Project CommUNITY Women Breaking Barriers: Indu Navar, Founder of Everything ALS "I made a promise to him that I will keep fighting for him and the disease,” Navar said. “And we need to prevent from other people going through what we went through. I want to keep them alive through this work. And I really feel it was such a terrible experience for us that I really don't wish this on anybody" Read more APRIL 2023 How AI CAN LOOK INTO YOUR EYES AND DIAGNOSE A DEVASTATING BRAIN DISEASE “The eyes are the windows to the soul.” It’s an ancient saying, and it illustrates what we know intuitively to be true – you can understand so much about a person by looking them deep in the eye. But how? And can we use this fact to understand disease? Read more MARCH 2023 STUDY SEEKS TO IMPROVE ALS DIAGNOSES WITH AI Speech recognition patterns can give clues to neurological conditions A study is underway to determine AI’s suitability for diagnosing the neurological disease ALS. The study is using AI-powered virtual assistants to detect potential signs of ALS in a participant’s speech patterns and facial gestures. Read more FEBRUARY 2023 LOCAL RESIDENT REVEALS HIS ALS JOURNEY Learn about the ALS journey of local resident Tommy Culpepper and find out you can support him! - KNWA & FOX24 - Northwest Arkansas & River Valley News + The ALS Association Arkansas Chapter Read more FEBRUARY 2023 What Dr. Chatbot ordereD Your doctor could be a robot sooner than you think. The pandemic and its toll on the health care sector spurred interest in the role artificial intelligence can play in easing burdens and improving efficiency, particularly via chatbots to tackle routine tasks like scheduling appointments and billing issues. But evidence is building that suggests chatbots are already pretty good at giving health advice. Read more JANUARY 2023 Montgomery County man with ALS part of study that aims to find root cause of disease "When a man died, he was said to have gone west," repeated 59-year-old Todd Kelly into a computer. He isn't reading a best-selling novel, but reciting speech to help treat and cure ALS. "The problem with ALS, unlike many other diseases, is they can't find a biomarker. The biomarkers, what you can see, is affected by a treatment," he described. Read more JANUARY 2022 Getting Vocal In December of 2016, Valerie Geerer was doing her normal lunchtime walk with work colleagues when a friend noticed something off about her gait. “I remember she said, ‘Is there something the matter with your foot?’” the fifty-nine-year-old Stamford resident recalls. “I told her I felt fine. A month later I was tripping myself. It was ironic. Six months earlier, my husband Michael and I were climbing mountains in Utah. And suddenly I couldn’t walk without stumbling.” Read more DECEMBER 2022 ALS genetic carrier finds the “path to higher ground” in clinical research ALS genetic carrier finds value in EverythingALS study leveraging digital biomarkers as a means to create tools for early detection of ALS and potentially other neurological diseasese. Read more DECEMBER 2022 New way to detect ALS; early diagnosis critical for treatment LAS VEGAS (KLAS) — Every 90 minutes, someone gets diagnosed with amyotrophic lateral sclerosis, or ALS. It’s a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and there is no cure. Read more NOVEMBER 2022 Woman's Husband's Health Journey Inspires Everything ALS NBC10’s Erin Coleman speaks to Everything ALS founder Indu Navar about her husband’s own ALS diagnosis and how the group is working to better ALS research. You can help the fight through Everything ALS or at the 2022 Walk to Defeat ALS. Read more NOVEMBER 2022 Walk to Defeat ALS happening in North Las Vegas Indu Navar, founder of EverythingALS, joined us to talk about how your participation helps raise funds and awareness. WATCH HERE NOVEMBER 2022 Non-profit conducts study to diagnose ALS quicker LANSING, Mich. (WLNS) — In the 150 years since ALS was discovered there is still no cure or single test to diagnose the disease. The demand for more answers is what drove one woman to start up her own non-profit. EverythingALS began its research in 2021 and now they’re working toward diagnosing the disease faster. “I really want to help people who are going through this disease,” said Indu Navar, Founder of EverythingALS. The study analyzes data when it comes to physiological changes and the progression of the disease. Navar says she wants to shift the focus to the brain, something she believes isn’t understood well enough. READ MORE SEPTEMBER 2022 Q&A With Indu Navar, founder of Everything ALS Indu Navar, founder of Everything ALS, speaks with Pharm Exec about how she lost her husband to the disease and how she's trying to improve the way its diagnosed. Indu Navar Diagnosing ALS is a difficult process for patients experiencing symptoms. After the death of her husband, tech entrepreneur Indu Navar founded Everything ALS, and organization she hopes will refine and improve the way ALS and other neurological conditions are diagnosed. READ MORE OCTOBER 2022 New technology helping ALS patients in Louisiana BATON ROUGE, La. (BRPROUD) — ALS, often called Lou Gehrig’s disease, is a progressive motor neuron disease that gradually robs people of their ability to walk, talk, swallow, and eventually breathe. Indu Navar, the founder of EverythingALS, said, “ALS has no known cause or cure and so patients suffer for years not knowing what is wrong and have to go through rigorous testing and a process of elimination to finally get diagnosed. If they are diagnosed, there are no treatments. Life expectancy is two to five years.” READ MORE SEPTEMBER 2022 EverythingALS Joins Forces with Aural Analytics, FeetMe, ZEPHYRx and Others for a First-Of-Its-Kind ALS Research Study SAN FRANCISCO (PRWEB) SEPTEMBER 19, 2022 EverythingALS, a patient-focused non-profit that brings together people living with ALS, caregivers, physicians, researchers, and pharmaceutical companies to collaborate on an open innovation platform using cutting-edge technologies and data science to improve progression measurements for neurological disease like Amyotrophic Lateral Sclerosis (ALS), has initiated a new study, The Radcliff Study, with partners in the quest to find a diagnosis, treatment, and cure for ALS... READ MORE AUGUST 2022 Groundbreaking research involving artificial intelligence could diagnose ALS patients sooner Five thousand people in the U.S. are diagnosed with a neurological disease called ALS every year. Medical experts say it typically takes an average of two years to diagnose, but new research will likely make that timetable a lot shorter. In 2019, Mark Weston and his wife, Kathleen, had their retirement all planned out. "We were all set up for a sail off into the sunset and have a really fun retirement," Weston said. "We had, we bought a house on the coast of Maine several months earlier." A week before the big move, he got a life-changing diagnosis. READ MORE AUGUST 2022 NeuroSense Joins EverythingALS Open Innovation Consortium; Set to Enroll US and EU Patients in Phase IIb Study NeuroSense's support will aid EverythingALS with ground-breaking patient research in a joint effort to develop treatments LOS ALTOS, Calif. and CAMBRIDGE, Mass., Aug. 2, 2022 /PRNewswire/ -- EverythingALS , a patient-focused non-profit that brings together patients, caregivers, physicians, researchers, and pharmaceutical companies using technological innovations and data science to support efforts to improve care for those living with a neurological disease like Amyotrophic Lateral Sclerosis (ALS), today announced NeuroSense Therapeutics Ltd. (NASDAQ: NRSN ) ("NeuroSense"), a company developing treatments for severe neurodegenerative diseases, as a new collaborator in the effort to identify treatments and a cure for ALS. READ MORE AUGUST 2022 ‘Death by 1,000 cuts:’ How emerging tech could change the journey for ALS patients EverythingALS aims to speed drug development through improved diagnostics. in 2016, Indu Navar’s husband, Peter Cohen, experienced the first symptom of what turned out to be amyotrophic lateral sclerosis (ALS), a progressive degenerative disease commonly known as Lou Gehrig’s disease. EverythingALS founder Indu Navar Permission granted by EverythingALS/Indu Navar “His foot was just acting weird,” says Navar, who founded the California nonprofit EverythingALS two years ago. “We didn’t know where to go, so we went to a chiropractor,” she says. READ MORE JULY 2022 Healthbeat: New ALS research driven by patient-focused non-profit SCRANTON, LACKAWANNA COUNTY— New research is underway to better understand and treat ALS, a difficult disease to diagnose with no known cure. ALS patient Paul Miller of Scranton is one of the participants. The progressive neurodegenerative disease ALS affects as many as 30,000 Americans. There is no known cure despite efforts to better understand it and treat it. ALS is a puzzling disease for certain with so much needing to be learned about it. READ MORE TOMMY EDWARD CULPEPPER,Jr MOVIE CONNOISSEUR JULY 2022 Bentonville man works to help diagnose ALS sooner A Bentonville man is dedicating his life to advocating for people with ALS and trying to help diagnose the disease sooner. “I’m a movie connoisseur,” said Tommy Edward Culpepper, Jr. “I love movies.” For Culpepper, movies have always been his saving grace. Even when he was a kid growing up in St. Louis, Missouri. “I grew up in the Peabody Projects and the home environment wasn’t the greatest,” he said. “Star Wars, Blade Runner, Highlander. Movies like that are excellent getaways for me.” Until he found himself in a nightmare that started in the doctor’s office... READ MORE JULY 2022 These 2 Surprising Traits May Predict ALS, New Research Says How ALS researchers are using an intriguing tool to learn keys of this disease that has at times taken years to diagnose. Plus, one woman's story of why she agreed to participate in this research Amyotrophic lateral sclerosis (sometimes called Lou Gherig’s disease, or ALS ) affects around 15,000 Americans, with about 5,000 receiving a new diagnosis each year, according to the Centers for Disease Control and Prevention. READ MORE JUNE 2022 Continue that momentum from the ALS Ice Bucket Challenge by getting involved in a unique study - New Day NW Researchers want every American to start recording their voice daily. They believe this data could be used to eventually develop cures for ALS. #newdaynw READ MORE MAY 2022 Patients giving voice to ALS research Back in 2014, millions of people poured icy water over their heads to spread ALS awareness and support research for the devastating neurodegenerative disease. Now tech developers want to hear your voices. Brian Andre has been living with ALS for six years. “On average they only give you 2 to 5 years of life after diagnosis and some progress very quickly,” he said. “I’m really in a very small percentage of patients who see little or no progression. … My weakness is in my left side, left leg and arm. So it throws my gait off.” READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 Live At 9: Researchers Collecting Audio and Video to Help ALS Detection Remember the summer Americans took time to dump buckets of ice water on their heads to help fight the deadly disease ALS? This summer, there’s a more comfortable way to help researchers learn about ALS and other neurological disorders. Researchers want people to record their voices and upload them for study. READ MORE Austen Eadie-Friedmann before his diagnosis of amyotrophic lateral sclerosis or ALS MAY 2022 A Connecticut man is battling a fatal disease with ‘enormous courage’. Love and his work with an ALS group give him ‘purpose Three years ago Austen Eadie-Friedmann, 38, had a dynamic career in the pharmaceutical/biotech field working for a Fortune 500 company and living in exciting places such as New York City, Boston and Europe, with his husband, William DeGregorio. The couple, now together for 18 years and married for five, loved their life traveling the world, sharing a passion for art. Then the devastating diagnosis arrived... READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 How high tech shoes could help doctors better understand ALS MOUNTAIN VIEW, Calif. - There is no cure for ALS, the progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, but a Silicon Valley nonprofit is hoping to change that. Starting Tuesday, EverythingALS , a Silicon Valley nonprofit and advocacy group, is starting its second research study involving ALS patients, using shoes with high-tech censors to track and study their movements. The study is open to 100 participants in the early stages of ALS, and is still accepting new participants.... READ MORE MAY 2022 Tech Tuesday: Using AI to fight ALS LANSING, Mich. (WLNS) — One non-profit organization is using technological innovations and data science to support those grappling with amyotrophic lateral sclerosis, otherwise known as ALS. EverythingALS was started by Indu Navar. READ MORE INDU NAVAR, CEO - EVERYTHINGALS MAY 2022 Bringing Awareness To ALS And Those Who Suffer From It In this podcast, we are joined by Indu Navar. Indu Navar is the CEO of Everything ALS, a company that prioritizes bringing awareness to Amyotrophic Lateral Sclerosis (ALS) and those who suffer from it. ALS is a neurological condition that affects the victim's motor neurons. This causes muscle atrophy all across the body, which can eventually cause suffocation and even death. LISTEN NOW APR 2022 Be The Good with Kate Cherichello Be the Good with Kate podcast- Kate Cherichello scheduled a taped interview with Indu for Wednesday, March 9th at 3:30pm EST to discuss EverythingALS and the research study. Episode went live on April 29th. LISTEN NOW FEB 28, 2022 MITSUBISHI TANABE PHARMA JOINS EVERYTHINGALS CONSORTIUM TO HELP ACCELERATE BIOMARKER DISCOVERY FOR NEUROLOGICAL DISEASES (San Francisco, CA)-- Today, EverythingALS.org (EALS), a patient-centric, citizen-based California nonprofit accelerating the discovery of digital biomarkers for neurological diseases such as amyotrophic lateral sclerosis (ALS), announced that Mitsubishi Tanabe Pharma Holdings America, Inc. READ MORE FEB 12, 2022 San Francisco based nonprofit launches new ALS research SAN FRANCISCO (KCBS SF) — A San Francisco-based nonprofit is recruiting average people to take part in ALS research. KCBS Radio’s Keith Menconi explains. READ MORE DEC 2021 ALS, Lou Gehrig’s Disease, takes many lives, Everything ALS is doing Deb Fabricatore lost her younger brother to ALS in 2014, and became involved in ALS advocacy. Indu Navar lost her husband in 2019 and immediately stepped up into action by building a nonprofit devoted to honoring her husband. READ MORE Bay Area Nonprofit Seeks 300 Volunteers in ALS Speech Study SAN FRANCISCO (CBS SF) — A Bay Area nonprofit dedicated to advancing research on an incurable — and fatal — disease of the nervous system is looking for 300 more people by the end of this month to participate in the largest-ever research project on the illness. READ MORE NOV 21, 2021 EverythingALS said it needs more than 300 volunteers for its study to combat amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease, an incurable, degenerative illness. READ MORE NOV 21, 2021 Bay Area non-profit looking for volunteers in Lou Gehrig diseases study OCT 2021 EverythingALS Launches “Stories and Innovation in ALS” Podcast October 21, 2021 (Silicon Valley, CA) – For an inside look at how ALS impacts patients and their caregivers as well as the innovations that researchers and clinicians are coming up with to find biomarkers, treatments, and cures for this life-threatening disease, start listening to the EverythingALS podcast , “Stories and Innovation in ALS.” EverythingALS (EALS) was founded in 2020 to help discover biomarkers – which are nonexistent -- and document the progression of ALS by launching the world’s largest speech study with more than 600 participants. READ MORE APRIL 2021 Accelerating Rare Disease Research TEDxSantaCatalinaSchool In this moving, TEDx talk, Indu Navar tells how she lost her husband, Peter Cohen, to ALS and what she is doing to bring together patients, families, researchers and people everywhere to change the way that rare diseases are looked at. WATCH VIDEO Digital Health InfoCast: Machine Learning for a Cause Canada has been an early leader in the AI space and there is no shortage of activity flourishing across the country. Today, we welcome Fanny Sie from Roche Canada and Indu Navar of Everything ALS to talk about machine learning and the End ALS Kaggle Challenge . LISTEN JULY 30, 2021 Indu Navar, CEO and Founder of EverythingALS, explores the roles of Artificial Intelligence, Machine Learning, and Brain Computer Interface in the search for a cure for ALS. She will also share innovative research studies on ALS detection, how Pharma can work with and support ALS patient advocates, and her key leadership lessons for digital health entrepreneurs and innovators. WATCH VIDEO JUNE 25, 2021 Impetus Digital PODCAST JULY 2021 New project to better identify and treat ALS uses AI and data sharing Through the AI CoE, Roche has collaborated with EverythingALS , AnswerALS, the Ontario Brain Institutes and ALS Canada to launch an open data science competition called the End ALS Challenge. READ MORE READ MORE Mar 29, 2021 THE STORY OF MODALITY.AI: HEALTHTECH AWARD WINNER Suendermann-Oeft states that one of the most significant achievements for them has been collaborating with the non-profit organization EverythingALS , as well as MIT, Harvard, and IBM to scale the number of Modality platform users to over 100 within three months for a study focusing on the early detection and improved prognostic accuracy of ALS ... "Jody O'Donnell introduced me to the founders of every Everything ALS , brother and sister, Murgesh Navar and Indu Navar, and Indu lost her husband to ALS a few years ago. Really, we just kind of hit it off from the get-go. Tremendous pair, both kind of serial entrepreneurs; they started multiple companies in the Bay Area and they just brought a passion and energy, a desire to do things quickly and challenge the status quo ... READ MORE April 30, 2021 interview with Katie Pecora for Patients Rising The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge , with the support of ALS Society of Canada , Ontario Brain Institute (OBI) and NetraMark Corp . The goal is to surface insights through an open data competition.. READ MORE Mar 29, 2021 EndALS Kaggle Challenge to TACKEL ALS EverythingALS Selected to Present at the American Academy of Neurology Virtual Annual Meeting EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science to support people with ALS, has been selected to ... READ MORE April 16, 2021 READ MORE Mar 25, 2021 Roche Canada AI Centre and EverythingALS to tackle ALS The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge, with the support of ALS Society of Canada, Ontario Brain Institute (OBI) and NetraMark Corp... Roche Canada Artificial Intelligence Centre and EverythingALS opens digital competition to tackle ALS EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science to support people with ALS, has been selected to ... READ MORE Mar 18, 2021

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Past Events Fireside Chat with Pathfinders Dec 17, 2025 Virtual Event Details Healey ALS MyMatch Overview & Updates with Dr. Suma Babu Virtual Event Details Giving Thanks with EverythingALS Virtual Event Details Fireside Chat with Pathfinders Nov 19, 2025 Virtual Event Details 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 Load More

Pateint Impact Stories pALS Impact Stories Jan 2023 Montgomery County man with ALS part of study that aims to find root cause of disease "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. The former high school public speaking teacher from Montgomery County is one of the 10% with ALS to live more than 10 years. READ MORE Jan 2023 Getting Vocal: Valerie Geerer on Everything ALS research “A friend told me about it, and I was like, ‘Sure, I’ll do it if it will help.’” 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. READ MORE Tommy Edward Culpepper,Jr., Bentonville man works to help diagnose ALS sooner. Jul 23, 2022 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. READ MORE Gwen’s story of ALS - These 2 Surprising Traits May Predict ALS, New Research Says. Jul. 20, 2022 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 ALS research ( sometimes called Lou Gherig’s disease). READ MORE Groundbreaking research involving artificial intelligence could diagnose ALS patients sooner. Aug 31, 2022 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. READ MORE Paul Miller, living with ALS for a decade participates in a new ALS research driven by patient-focused non-profit. Jul 28, 2022 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. READ MORE Patients giving voice to ALS research - Brian Andre has been living with ALS for six years. May 31, 2022 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. READ MORE Austen Eadie -Friedmann, a Connecticut man is battling a fatal disease with ‘enormous courage’. May 30, 2022 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. READ MORE

Co-hosted by: Future of Digital Biomarkers Summit August 10th & 11th, 2025 We are excited to host our third annual Digital Biomarkers and Endpoints Summit Agenda Attendees Location Monday, August 11th 2025 Agenda Johnson & Johnson - 320 Bent St, Cambridge, MA 02141 View Agenda Anchor 7 View Agenda Attendees & Speakers Anchor 6 Consortia Members Lead Scientific Collaborators Strategic Partners Eveything ALS Team Eric William Dane Award-Winning Actor Television & Film Performer Eric William Dane is an award-winning American actor from San Francisco, California, celebrated for his dynamic performances in both television and film. He is best known for his portrayal of Dr. Mark Sloan—nicknamed “McSteamy”—on the long-running ABC medical drama Grey’s Anatomy, a role that earned him a Satellite Award and a Screen Actors Guild Award as part of the ensemble cast. Dane further demonstrated his versatility as Captain Tom Chandler in the post-apocalyptic series The Last Ship and as the emotionally complex Cal Jacobs in HBO’s critically acclaimed drama Euphoria. With a career spanning more than two decades, Dane has become known for infusing every role with intensity, charisma, and depth. His performances consistently resonate with audiences and critics alike, cementing his place as one of contemporary television’s most compelling actors. Off screen, he continues to pursue roles that challenge convention and showcase his impressive emotional range. Learn More Anchor 3 Fiona Elwood, Ph.D Vice-President, Disease Area Lead, Neurodegeneration Johnson & Johnson Fiona Elwood is Vice President and Neurodegeneration Disease Area Leader at Janssen R&D. She specializes in tau biology and neurodegenerative research, leveraging human cell models and advanced screening for target discovery. Previously, she was Interim Global Head of Neuroscience at Novartis. Elwood holds a PhD in neuroscience from the University of London and completed her postdoc at Stanford. Charmaine DeManuele, Ph.D Vice-President, R&D Data Science & Digital Health Johnson & Johnson Charmaine Demanuele, Ph.D. is Vice President of R&D Data Science & Digital Health at Johnson & Johnson Innovative Medicine. She leads global efforts to apply AI, machine learning, and real-world data in early clinical development, with a focus on digital biomarkers, predictive analytics, and trial-enabled digital endpoints for neuroscience and rare diseases. Previously, she held senior roles at Pfizer, advancing AI/ML and decentralized trial strategies. Nicholas Seneca, Ph.D Scientific Director, Precision Medicine AbbVie Nicholas Seneca, Ph.D. is Scientific Director of Precision Medicine at AbbVie, where he leads biomarker integration and translational science in clinical development. With expertise in neuroscience, molecular imaging, pharmacology, and trial design, he focuses on identifying patient subgroups for targeted therapies. Prior to AbbVie, he held roles at Novartis and PMOD Technologies, contributing to biomarker-driven drug development. His work advances personalized medicine through data-driven insights and cross-functional collaboration. Josh Cosman, Ph.D Director, Digital Health Strategy AbbVie Josh Cosman, Ph.D. is an interdisciplinary neuroscientist with two decades of experience developing neurophysiological and behavioral markers of cognition and motor function in aging and neurological disorders. Over the past ten years, he has led biomarker and functional marker development in both digital health and pharma, using scalable tools and consumer devices. He also serves as Industry Co-Director for the Critical Path for Parkinson’s Digital Drug Development Tools consortium and is active in several pre-competitive digital health and translational neuroscience initiatives. Bryan Boggs, Pharm.D. Head of Regulatory Affairs Acurastem Brian Boggs is a seasoned Regulatory Affairs executive at Acurastem, guiding regulatory strategy for novel neurodegenerative therapies. With over 20 years of experience, he previously served as VP of Regulatory Affairs at QurAlis, leading global IND/CTA filings and regulatory engagement. At Acurastem, he ensures regulatory readiness for early-stage ALS programs. Joel Schwartz, Ph.D Scientific Director - Digital Biomarkers Bristol Myers Squibb Joel Schwartz, Ph.D. is Scientific Director of Digital Biomarkers in the Neuroscience Translational Research Center at R&D. He leads strategy for developing and validating digital biomarkers to support neuroscience drug discovery and clinical trials. With prior roles at Biogen and Pfizer, he brings deep experience in translating digital measures into reliable endpoints for neurodegenerative diseases. Jason Osik, Ph.D Associate Director, Digital Health Bristol Myers Squibb Jason Osik, Ph.D. is Associate Director of Digital Health at Bristol Myers Squibb, where he leads digital biomarker development and advanced analytics for clinical trials. With a Ph.D. in Neuroscience from Brandeis and prior roles at Biogen and Boston Scientific, he brings expertise in machine learning, neurology, and real-world data to advance precision drug development. Lars Ittner, MD Co-Founder and Chief Medical Officer Celosia Therapeutics Lars Ittner, M.D., Ph.D. is Co-Founder and Chief Medical Officer of Celosia Therapeutics and Director of the Dementia Research Centre at Macquarie University. With over 20 years of neuroscience research experience, he focuses on Alzheimer’s disease and neuronal hyper-excitation. At Celosia, he leads clinical strategy for gene therapies targeting TDP-43 pathology in ALS and related disorders. Brian Winger, Ph.D Associate Vice-President, Digital Health Eli Lilly & Company Brian Winger, Ph.D. is Senior Advisor of Translational Technology & Innovation at Eli Lilly’s Digital Health Office. With over 20 years at Lilly and a background in analytical chemistry, he focuses on developing and validating digital biomarkers to support novel digital endpoints in drug development. He brings deep expertise in mass spectrometry and translational innovation to advance Lilly’s clinical portfolio. Guofa Shou, Ph.D Digital Health R&D Leader Eli Lilly & Company Guofa Shou, Ph.D. is a digital health R&D leader at Eli Lilly with over 15 years of experience in physiological signal research. He leads the development and integration of digital health technologies and biomarkers into clinical trials across cardiometabolic, neurodegenerative, oncology, immunology, and OSA indications. His work focuses on enabling precise, objective, and scalable health measurements to advance meaningful insights in clinical outcomes. Ann Marie Hake, MD Executive Director, Medical - Digital Health Eli Lilly & Company Ann Marie Hake, M.D. is a board-certified neurologist and clinical research physician in the Digital Health R&D group at Eli Lilly, where she also serves as Vice Chair of the Lilly Bioethics Advisory Committee. With fellowship training in neurodegeneration and expertise in medical informatics, she has led clinical trials and provided medical leadership in neurodegeneration and migraine. She is also an adjunct faculty member at Indiana University School of Medicine, where she continues to serve on the IRB and sees neurology patients twice a month. Michelle Cecić Director, Clinical & Technical Operations Mitsubishi Tanabe Pharma America Michelle Cecić is Associate Director of Clinical & Technical Operations at Mitsubishi Tanabe Pharma America, where she leads clinical trial planning and execution for neurology programs, including ALS and rare diseases. With expertise in clinical operations, site management, and regulatory compliance, she has contributed to multiple ALS and edaravone-related studies. Michelle works cross-functionally to ensure operational excellence and accelerate the delivery of life-changing therapies. Amanda Goldberg, MPAS, PA-C Medical Science Liaison Mitsubishi Tanabe Pharma America Amanda Goldberg, PA-C is a Medical Science Liaison at Mitsubishi Tanabe Pharma America, with 19 years of healthcare experience, including over 12 years as a Physician Associate in adult and pediatric neurosurgery and neurocritical care. Now in her first year as an MSL, she supports medical engagement and scientific exchange in ALS and Parkinson’s disease, bringing strong clinical insight and passion to the neuroscience field. Shiran Zimri, Ph.D VP of R&D and Country Lead NeuroSense Therapeutics Shiran Zimri, Ph.D. is Vice President of R&D and Country Lead for Canada at NeuroSense Therapeutics, where she oversees research programs in ALS, Parkinson’s, and Alzheimer’s diseases. With over 12 years of experience in preclinical drug development, she applies multidisciplinary approaches to neurodegenerative research. Dr. Zimri has published widely, presented at global conferences, and is an active member of BIO, Bashaar, and Midaat. She holds a Ph.D. in Neurobiology from Tel Aviv University. Matthew Davis, MD, R.Ph Chief Medical Officer Neuvivo Matthew Davis is a biopharmaceutical executive with 25+ years’ experience in developing, approving, and launching small molecules, biologics, and devices. He has served as COO and CMO at Tiziana Life Sciences, and as CMO at Endo Pharmaceuticals and Lupin. At URL Pharma, he secured three NDA approvals and invented all 17 Orange Book-listed patents for Colcrys®, contributing to its $2B acquisition by Takeda. Dr. Davis holds a Pharmacy degree from Temple, an M.D. from the Medical College of Pennsylvania, and completed surgical and urology training at Brown and Washington Hospital Center. Henk Schuring, Pharm.D. Chief Regulatory & Commercialization Officer Prilenia Therapeutics Henk Schuring is a senior pharmaceutical executive with 30+ years’ experience and a strong track record in rare diseases. A trained pharmacist, he has helped develop several “first treatments” and held regional and global roles in Regulatory Affairs and Commercial. At Prilenia, he shapes regulatory pathways and guides clinical program development, advancing therapies for underserved patients. Kasper Roet, Ph.D Founder, Chief Executive Officer Quralis Corporation Kasper Roet, CEO and co-founder of QurAlis and EnClear Therapies board member, is a neuroscientist specializing in gene therapies and stem cell-based precision medicine for ALS. He earned his Ph.D. from the Netherlands Institute for Neuroscience, trained at Johnson & Johnson and Harvard, and co-founded QurAlis with Harvard professors Clifford Woolf and Kevin Eggan. His honors include the Milton Safenowitz Fellowship, Fierce15 Biotech award, and Henri Termeer Transatlantic Connections Award. Tom Bowman, MD, MPH Medical Director & VP Clinical Sciences QurAlis Corporation Tom Bowman, MD, MPH is Medical Director and Vice President of Clinical Sciences at QurAlis Corporation, where he leads clinical development strategies for precision ALS and neurodegenerative therapies. With expertise in early-phase trial design, regulatory planning, and translational medicine, he guides programs from preclinical research through execution. He has worked in both biotech and large pharma, contributing to rare disease and RNA-based therapeutic programs. Dr. Bowman is committed to advancing patient-centered treatments for currently untreatable conditions. Brian Radecki Co‑Founder, Chief Executive Officer Rapa Therapeutics Brian Radecki is the Co-Founder and Chief Executive Officer of Rapa Therapeutics, a clinical-stage biotech developing cell therapies for cancer and ALS. Formerly CFO and EVP at CoStar Group, he helped grow it into a multibillion-dollar public company before moving into life sciences. Since founding Rapa in 2016, he has led the company from startup to state-of-the-art labs and advanced clinical trials. Radecki is also active as an angel investor in healthcare innovation. Daniel Fowler, MD Co-Founder, Chief Medical Officer Rapa Therapeutics Daniel Fowler, MD is the Co-Founder and Chief Medical Officer of Rapa Therapeutics, where he leads the development of next-generation RAPA-T cell therapies for cancer and ALS. A former National Cancer Institute physician-scientist, he pioneered research on regulatory T cells and Th2 cells to modulate immune responses in disease. His team developed hybrid T cells (RAPA-501) demonstrating safety and biological activity in ALS patients. Dr. Fowler’s work is advancing Phase 2/3 trials and expanded access programs. Matthew Wipperman, Ph.D Associate Director, Digital Medicine Regeneron Pharmaceuticals Matthew Wipperman, Ph.D is Associate Director of Digital Medicine at Regeneron Pharmaceuticals, where he leads strategy for sensor-derived biomarkers to transform trial outcome measures. He contributes to biomarker design, exploratory data analysis, and the discovery of innovative clinical endpoints. With 15 years of scientific and clinical research experience, including work at Sloan Kettering, he builds cross-functional collaborations to ensure clinical and regulatory success. Dr. Wipperman holds advanced degrees in chemistry and clinical science. Oren Levy, MD, Ph.D Medical Director, Early Clinical Development Regeneron Pharmaceuticals Oren Levy, MD, Ph.D is Medical Director of Early Clinical Development at Regeneron Pharmaceuticals, focusing on neurodegenerative disease programs. He integrates digital biomarkers, physiological signal-based assessments, and innovative trial design into early-phase studies. Dr. Levy has published research on remote respiratory monitoring in ALS and mobile gait analysis in Parkinson’s disease. He is dedicated to developing objective, scalable clinical endpoints to enhance trial precision and efficiency. Andreas Kalmes, Ph.D Vice President, Drug Development Revalesio Therapeutics Andreas Kalmes is Vice President of Drug Development at Revalesio Therapeutics, leading their ALS clinical program since 2015. He has over 20 years of experience in biotech and pharma, with previous leadership roles at Amgen and Immunex managing drug programs from discovery to clinical trials. Dr. Kalmes earned his Ph.D. from the University of Mainz in 1993 and did postdoctoral research at the University of Washington. At Revalesio, he focuses on advancing RNS60 and other treatments for neurodegenerative and inflammatory diseases. Irina Antonijevic, MD, Ph.D Chief Medical Officer, Trace Neuroscience Dr. Irina Antonijevic is Chief Medical Officer at Trace Neuroscience with over 30 years of experience in psychiatry, neurology, academia, and drug development. She was previously CMO at EveryONE Medicines, focusing on individualized therapies for rare neurogenetic mutations, and at Triplet Therapeutics, working on treatments for DNA repeat expansion disorders. She has also held senior roles at Wave Life Sciences, vasopharm GmbH, Sanofi Genzyme, Lundbeck, and Schering AG. Dr. Antonijevic trained at the Max Planck Institute of Psychiatry and earned her M.D. and Ph.D. from the University of Edinburgh. Sanjay Chandriani, Ph.D Head of Translational Sciences Trace Neuroscience Sanjay Chandriani leads Translational Sciences at Trace Neuroscience, focusing on developing biomarkers and bridging early scientific discoveries to clinical use, especially for ALS and neurodegenerative diseases. With a background in molecular biology, he has contributed to research published in scientific journals. His work centers on turning basic science into new therapies for complex neurological conditions. At Trace Neuroscience, he works with a multidisciplinary team to create innovative solutions for unmet needs in neurodegeneration. Ilan McNamara, Ph.D Vice-President, Regulatory Affairs VectorY Therapeutics Ilan McNamara is Vice President of Global Regulatory Affairs at VectorY, leading regulatory strategy for the company’s programs. With expertise in neuroscience, molecular biology, and regulatory science, he has extensive experience guiding therapies through clinical development. Before VectorY, Ilan held senior regulatory roles at Prevail Therapeutics, working on AAV-based treatments for neurodegenerative diseases. He specializes in regulatory submissions, global agency interactions, and manufacturing transitions, dedicated to advancing safe and effective therapies through science-driven regulatory innovation. James Berry, MD, MPH Chief, Division of ALS and MND Massachusetts General Hospital James Berry is the Winthrop Family Scholar in ALS Sciences, Chief of the Division of ALS and Motor Neuron Diseases, and Director of the Massachusetts General Hospital (MGH) ALS clinic. He has expanded care beyond the clinic through programs like ALS House Call and video tele-visits. As Director of the MGH Neurological Clinical Research Institute, he leads national and global trials focused on biomarkers of inflammation, mobile health, and digital phenotyping to advance ALS therapies while easing patient burden. He also directs the Mass General Brigham Neurodegenerative Clinical Research Fellowship and serves on leadership panels for NEALS and the CDC. Ernest Fraenkel, Ph.D Department of Biological Engineering Massachusetts Institute of Technology Ernest Fraenkel is the Grover M. Hermann Professor in Health Sciences and Technology at MIT and an Associate Member of the Broad Institute. He leads the Fraenkel Lab, combining computational and experimental systems biology to find new therapies for diseases like ALS, Huntington’s, glioblastoma, cancer, and diabetes. Dr. Fraenkel earned his A.B. in Chemistry and Physics summa cum laude from Harvard and his Ph.D. in Biology from MIT. His research focuses on using multi-omics data to map molecular pathways and identify drug targets. Anchor 1 Lyle W. Ostrow, MD, PhD Associate Professor of Neurology, Lewis Katz School of Medicine Neurologist, MDA/ALS Center of Hope Temple University Lyle Ostrow is Associate Professor of Neurology at Temple University and leads the MDA/ALS Center of Hope. He directs the ALS Postmortem Research Core with the CDC’s National ALS Registry, advancing biomarker discovery. A physician-scientist trained at Johns Hopkins, he chairs the Department of Defense ALS Research Program, managing a $40M+ budget. Dr. Ostrow is known for his clinical leadership and efforts to improve ALS care and therapies. Merit Cudkowicz, MD, MSc Executive Director, Mass General Brigham Neuroscience Institute Massachusetts General Hospital Merit Cudkowicz is Executive Director of the Mass General Brigham Neuroscience Institute, Director of the Sean M. Healey & AMG Center for ALS, and Professor of Neurology at Harvard Medical School. A leader in ALS research, she co-founded the Northeast ALS Consortium and leads the HEALEY ALS Platform Trial to speed therapy development. Dr. Cudkowicz has pioneered antisense oligonucleotide treatments and adaptive trial designs. She holds degrees from MIT and Harvard and has received major awards like the Sheila Essay ALS Award and the Forbes Norris Award. Eduardo R. Locatelli, MD, MPH Physician Executive Director & Neurologist Director, Cathy J. Husman ALS Center NSU Neuroscience Institute Eduardo R. Locatelli is Physician Executive Director of the NSU Neuroscience Institute and leads the Cathy J. Husman ALS Center of Excellence at NSU Health, Florida. With over 30 years as a U.S.-licensed physician and researcher, he holds an MD, MPH, Neurology Board Certification, and Neuroimaging Diplomate. Dr. Locatelli focuses on improving ALS patient care through leadership and strategic planning. He helped establish a multidisciplinary ALS clinic with Mass General Hospital and secured over $10 million in philanthropy to develop the ALS Center. He also leads initiatives in medical informatics, quality improvement, and ethics. Ed Lein, Ph.D Senior Investigator Allen Institute for Brain Science Dr. Ed S. Lein is a Senior Investigator at the Allen Institute for Brain Science and Affiliate Professor at the University of Washington. He earned his B.S. in biochemistry from Purdue and Ph.D. in neurobiology from UC Berkeley, with postdoctoral work at the Salk Institute. Since joining the Allen Institute in 2004, he has led projects like the Allen Mouse Brain Atlas and human brain atlases. His research focuses on single-cell genomics and spatial transcriptomics to map brain cell types, study disease vulnerability, and develop precision therapies. He also serves on BICAN and Human Cell Atlas committees. Anchor 2 Lou Warnett, MSc Healthcare Data Scientist Amazon Web Services (AWS) Lou Warnett is a Healthcare Data Scientist at Amazon Web Services (AWS), helping healthcare and life sciences organizations use machine learning, generative AI, and cloud analytics to drive innovation. He partners globally with academic centers, biotech firms, and health systems to support precision medicine, clinical research, and genomics on AWS. Lou holds a Master’s in Mathematics and Computer Science from Imperial College London. His expertise includes AI solution design, multi-modal data integration, and advanced modeling focused on improving patient outcomes and accelerating discovery through data. David Master AI Specialist Amazon Web Services (AWS) David Master is an AI Specialist at Amazon Web Services (AWS), where he helps organizations design and deploy scalable, cloud-based AI solutions. With a strong background in machine learning engineering and cloud infrastructure, he collaborates across sectors to drive innovation and responsible AI adoption. David is a technology enthusiast and advocate helping nonprofit organizations harness data to apply artificial intelligence to their missions and the societal good they advance. His work spans AI model development, optimization, and workflow design with a focus on trust, fairness, and transparency to enable organizations to unlock value through intelligent systems. Fernando Vieira, MD Chief Executive Officer & CSO ALS Therapy Development Institute Fernando Vieira is CEO and Chief Scientific Officer of the ALS Therapy Development Institute (ALS TDI), a nonprofit biotech focused on ALS treatments. Trained as a physician-scientist at Harvard Medical School and with a background in Biological Engineering from the University of Florida, Dr. Vieira has worked in ALS research since 2001. He leads efforts in preclinical drug discovery, biomarker development, and ALS model optimization. Under his leadership, ALS TDI has advanced multiple therapies into clinical trials and pioneered new ALS drug development approaches. Brendan O’Leary Digital Health & Medical Technology Former Deputy Director & Acting Director, FDA Digital Health Center of Excellence Regulation and policy advisor Brendan O’Leary advises technology developers, healthcare organizations, and professional groups on digital health and medical technology development, evaluation, and regulation. He spent 14 years at the FDA, including as founding Deputy Director of the Digital Health Center of Excellence. Brendan helped shape key FDA policies and decisions on medical devices and digital health. He has represented the agency in public forums, congressional hearings, and media, and played a major role in the federal response to SARS-CoV-2. Ajay Verma, MD, Ph.D General Partner Formation Venture Engineering Ajay Verma is a neuroscientist, neurologist, and military and biotech veteran. He practiced neurology at Walter Reed Army Medical Center for 15 years before a 20-year biopharma career with executive roles at Merck, Novartis, Biogen, United Neuroscience, Codiak, and Yumanity. Ajay has worked across various drug and biotech platforms and is now a General Partner at Formation Venture Engineering and CEO of the immunotherapy startup Twilight Bioscience in Massachusetts. Sabrina Paganoni, MD, Ph.D Co‑Director, Neurological Clinical Research Institute (NCRI) Massachusetts General Hospital Sabrina Paganoni is Co-Director of the Neurological Clinical Research Institute at Massachusetts General Hospital and Assistant Professor at Harvard Medical School. A physician-scientist at the Healey & AMG Center for ALS, she leads ALS clinical trials, co-leads the HEALEY ALS platform trial, and co-chairs the global PHOENIX trial. Her work focuses on innovative trial designs, digital tools, and assistive tech for ALS and related disorders. With over 100 publications, she serves on editorial boards and holds three board certifications. Marianne Chase Senior Director, Clinical Trial Operations Neurological Clinical Research Institute Massachusetts General Hospital Marianne Chase is Senior Director of Clinical Trial Operations at the Neurological Clinical Research Institute and Healey Center for ALS at MGH. She helped launch the first ALS Platform Trial in 2020 and has over 25 years of experience leading NIH, foundation, and industry-sponsored research in trial design, coordination, and regulatory compliance. Marianne supports NeuroNEXT, NEALS, and the Parkinson’s Study Group, serves on the Clinical Trial Transformation Initiative, and teaches clinical trial best practices as adjunct faculty for the NINDS Clinical Trials Methodology Course. Karl A. Sillay, MD Assistant Professor of Neurological Surgery; Director of Adult Functional Stereotactic Neurosurgery Karl Sillay is an Assistant Professor of Neurological Surgery and Director of Adult Functional and Stereotactic Neurosurgery. He earned his medical degree from the Medical College of Georgia, completed his neurosurgery residency at Vanderbilt University, and pursued a fellowship in functional neurosurgery at the University of California San Francisco. With a career that spans positions in Colorado, Tennessee, and Wisconsin, Dr. Sillay specializes in treating movement disorders and complex spinal and cranial conditions. He is board-certified in neurological surgery and is committed to advancing precision surgical techniques and mentoring the next generation of neurosurgeons. John Furey Clinical Research Coordinator Lewis Katz School of Medicine Temple University John Furey is Clinical Research Coordinator at Temple University’s Lewis Katz School of Medicine, working with the MDA/ALS Center of Hope. A biomedical engineering graduate from Drexel University, he started as a co-op supporting ALS research and now leads coordination of clinical studies including a tissue biorepository, ALS natural history investigations, and biomarker tracking in patients treated with Radicava. John mentors Drexel co-op students and is dedicated to advancing ALS care through research and patient engagement. Philip Reilly, MD, JD Co‑Founder & Director, Luna Genetics Venture Partner, Third Rock Ventures EverythingALS Boardmember Philip Reilly is a biotech entrepreneur, physician, and attorney, co-founder and director of Luna Genetics, which develops next-gen prenatal diagnostic technologies. He is also a Venture Partner at Third Rock Ventures, helping launch innovative life science companies. Trained in internal medicine and clinical genetics, Dr. Reilly has held leadership roles including interim CMO at bluebird bio and CEO of Interleukin Genetics. He has authored seven books and over 100 scientific and policy articles, working at the crossroads of genetics, medicine, ethics, and law. Susan Catalano, Ph.D Chief Scientific Officer, Biotechnology Industry Leader EverythingALS Boardmember Susan Catalano is a biotechnology executive and Chief Scientific Officer who advises early-stage biotech ventures. She co-founded Cognition Therapeutics in 2007, leading efforts that developed CT1812, now in clinical trials. With over 20 years in neurobiology and oncology drug discovery, she has held executive roles at CodA Biotherapeutics, Acumen Pharmaceuticals, Rigel Pharmaceuticals, and Roche. Dr. Catalano has authored many publications and patents, led NIH-funded projects, and serves on scientific advisory boards for neurodegenerative drug development. EverythingALS Team John Hudacek Retired U.S. Army veteran Person living with ALS EverythingALS Pathfinder John Hudacek, a retired U.S. Army veteran from Melbourne, Florida, served 20 years in roles including Infantryman, Aerial Photographer, and Special Forces Medic. He later led training at a military boarding school and worked as an Army advisor and recruiter until 2020. Following a COVID-19 infection that year, he was diagnosed with ALS, with symptoms since 2019. He began FDA-approved treatments and maintains an ALSFRS-R score of 44. He follows a healthy lifestyle with daily exercise, therapy, and VA care. Steve Kowalski Retired Apple Computers Person Living with ALS Steve Kowalski from Boston, MA, retired from Apple in 2020 after 34 years. Diagnosed with ALS in 2017, he has raised over $250K for research, joined clinical trials, and serves on ALS boards. He uses mobility aids but stays active and advises on ALS technology. Anchor 4 McFinn Lovere ALS Reversal #42 Community Lead and Spiritual Guide Head of Pathfinder Program EverythingALS McFinn Lovere, diagnosed with ALS in 2006 and initially paralyzed, reversed his progression through spiritual practice and care. He is ALS Reversal #42 confirmed by Dr. Richard Bedlack. McFinn now leads the Pathfinder Program at EverythingALS and mentors others while participating in ALS research at Duke and other institutes. Indu Navar, MSCS Board Member, Global Genes Ph.D. Candidate, King’s College London EverythingALS Indu Navar is a Silicon Valley tech entrepreneur and CEO of the Peter Cohen Foundation (EverythingALS.org and EverythingAD.org), focused on tech-driven research for neurological diseases. After losing her husband to ALS in 2019, she dedicated herself to patient-led research and digital health. She serves on boards for Global Genes and Answer ALS. Indu has held leadership roles at Woodside Capital, Serus Corporation, WebMD, and NASA. She holds Bachelor's degrees in electrical engineering and Master's in computer science and currently pursuing a Ph.D in Neuroscience at King's college, London. Christian Rubio, MBA Executive Director & Head of Development EverythingALS Christian Rubio is Executive Director and Head of Development at EverythingALS, with 15+ years in patient advocacy, partnerships, and fundraising. He previously led advocacy at Praxis Precision Medicines and strategic advancement at Global Genes. An MBA graduate from Babson College, he drives initiatives in digital biomarkers, clinical trial participation, and collaboration in ALS and neurodegenerative research. Stephanie Henze Head of Design, Clinical Research Innovation & Strategy EverythingALS Stephanie Henze leads Design, Clinical Study, Research, Innovation, and Strategy at EverythingALS, with 30+ years in developing groundbreaking medical products and experiences. Combining medicine and industrial design, she applies user-centered design to advance digital biomarkers and patient engagement. She has held leadership roles at McKinsey & Company, LUNAR, and Hiemstra Product Development, and is a graduate of Art Center College of Design. Natalia Luchkina, Ph.D Research & Innovation Lead EverythingALS Natalia Luchkina leads digital health research and innovation strategy at EverythingALS, focusing on ALS and neurodegenerative diseases. She has 15+ years in healthcare and life sciences, including consulting at McKinsey and research at Harvard Medical School and McLean Hospital. Holding a Ph.D. in Physiology and Neuroscience from the University of Helsinki, she specializes in strategy, data-driven solutions, and organizational transformation. Silviya Bastola Research and Operations EverythingALS Silviya Bastola has over four years’ experience managing Phase II–IV clinical studies in biotech, pharma, and medical devices, focusing on infectious disease, vaccines, rare diseases, and neurology. At EverythingALS, she advances patient-centered innovation through digital health tools, research design, and app development, supporting the care-to-cure mission for ALS. She combines expertise in neuroscience, project management, and clinical operations to improve outcomes and accessibility. Swapnil Harkanth Head of Software Development EverythingALS Swapnil Harkanth is the Head of Software Development at EverythingALS, bringing extensive expertise in cloud computing, software engineering, data analytics, and cybersecurity. Passionate about innovation, Swapnil designs and implements scalable, high-performance solutions that support digital biomarker platforms and patient-centered technologies. With a strong focus on reliability, integration, and system optimization, Swapnil leads cross-functional teams through complex technical transformations. Known for delivering measurable impact, Swapnil enables organizations to harness technology to accelerate research, streamline operations, and maintain a competitive edge in a rapidly evolving digital landscape. Anusha Rao AI Research Engineer Neuroscience & Digital Biomarkers Student Ambassador Anusha Rao, AI Research Engineer at Arkifi and neuroscience researcher, specializes in digital biomarkers for neurodegenerative diseases. With prior work at the NIH and Johns Hopkins School of Medicine, she developed machine learning models for traumatic brain injury therapies and used AlphaFold to study protein structures tied to ALS. She also contributed to the ALS Generative AI initiative at EverythingALS, merging expertise in large language models, cognitive science, and computational neuroscience to advance early detection and treatment strategies for neurological disorders. Julian Peller, MSc Head of Data Science Digital Biomarker Research Lead Kaggle Code Grandmaster EverythingALS Julian Peller leads the EverythingALS Data Science team, advancing digital biomarkers for early ALS diagnosis and progression tracking. With 15+ years in software, an MSc in Computer Science, and recognition as a Kaggle Code Grandmaster, he applies deep learning and statistical methods to multimodal data to drive innovation in digital health. Alan Taitz, Ph.D Research Scientist, AI for Speech, Health & Biosensing SRI International EverythingALS Advisor Alan Taitz, an advanced computer scientist at SRI International, has 10+ years’ experience in statistical modeling and machine learning, with expertise in physics, neuroscience, speech, and AI. At EverythingALS, he advises on digital biomarker development for clinical trials, partnering with pharma and contributing to an FDA COA Letter of Intent. Holding three pending patents and a PhD on brain language processing, he is also passionate about teaching physics and machine learning. Marcos Trevisan, Ph.D Collaborative Investigator University of Buenos Aires & CONICET EverythingALS Marcos Trevisan is a collaborative investigator at EverythingALS and the University of Buenos Aires/CONICET, focusing on digital biomarkers, speech analysis, and neurodegenerative diseases. He develops AI models to monitor ALS progression via remote assessments like home spirometry and acoustic analysis. His work includes attention-based models to measure speech impairment, enhancing clinical endpoints. Dr. Trevisan combines computational modeling, neuroscience, and translational research to advance ALS care and digital health. Diego Shalom, Ph.D Research Scientist University of Buenos Aires & CONICET EverythingALS Diego Shalom is a Data and Research Scientist at EverythingALS and the University of Buenos Aires/CONICET, specializing in machine learning for health and neuroscience. He develops digital biomarkers for ALS, analyzing speech and respiratory data for early detection and tracking. His work includes listener effort modeling, home spirometry, and disease progression prediction. With a background in physics and computational modeling, Diego creates scalable tools to improve clinical assessment and neurodegenerative research. Anchor 5

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 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

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