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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

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

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

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

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. Nutrition & EverythingALS App Office Hours JOIN US Multiple Dates Nutrition & EverythingALS App Office Hours on July 10th When Jul 10, 2025, 7:00 PM EDT Where Virtual Event Details 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

EVERYTHING ALS Pathfinders Everything ALS Pathfinders' vision is to empower individuals affected by ALS and their families. Our threefold mission focuses on: Our main priority is to provide support for individuals with ALS, from offering care to seeking a cure. As an Everything ALS Pathfinder, we wholeheartedly welcome you into our community, a place where you will never have to feel isolated. This is a community where you belong, where your voice is heard, and your experiences are valued. Let's come together and provide unwavering support to help each other Live a fulfilling life despite the difficulties we may face with ALS. 1. Physical Empowerment: We are dedicated to finding practical solutions and resources to alleviate the physical challenges associated with ALS, aiming to improve the quality of life for patients as their conditions evolve. 2. Mental Resilience: We're here to support you at all times. Our goal is to improve the mental well-being of people with ALS, caregivers, and their families by providing ongoing support and fostering a sense of community. You are not alone in this journey. 3. Spiritual Support: By addressing spiritual concerns, we aim to provide a comprehensive approach to healing, ensuring individuals find solace and meaning amid the challenges they face. My name is Willard Blackwell . I was diagnosed with ALS in May of 2022. I had fallen while playing pickleball, which prompted the doctors to investigate my symptoms. As a professional singer and musician leading the Gator Nation Band, I have encountered daily challenges due to the loss of full use of my hands or legs. I no longer perform with my band but recently sang with friends. I still try to do the things I love as long as they don't worsen my symptoms. I have learned about conserving energy, and I try not to overexert myself so I can keep moving forward. I find joy in music and comedies – anything that brings a smile to my face. This experience with ALS has taught me a lot about maintaining a positive attitude while battling this terrible disease. Initially, I was reluctant to ask for help. My friend, Kathleen, noticed my hesitation and called in my soul tribe because she knew I needed more assistance. I understand that seeking help can be difficult, but it can also be incredibly rewarding. We don't have to go through this alone. It's much better to have support to help you navigate your way. If you feel that I can support you on your journey, please connect with me on Fireside Chats. My name is McFinn Lovere . My experience of reversing my ALS put me on the path to being of service to others with this devastating disease. At my weakest point I was only able to move two fingers and my head. I know what 24-hour daycare means. I have experienced the feelings you take on from isolation. I had one caregiver who was excellent. I had another caretaker who looked at it as a job, not compassionate service. It is so important for your mental stability to have someone caring for you who understands the stress ALS creates for pALS and their families. I hope my and my family's experiences will help relieve some of the Stress ALS brings into your life. Your Everything ALS Pathfinder, McFinn, is reaching out; reach back. mcfinn@everythingals.org My Name is Faith Oremland . My 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. Being an Everything ALS Pathfinder gives me the opportunity to help others on our ALS journey. You are not alone! It's about sharing our stories, listening to each other, providing helpful information, and being there with compassion and love. "I am committed to doing whatever possible to help my son and other people with ALS and their families live their best lives. We can do this working together with hope and positivity!" My career was in health data information systems. I am an amateur storyteller of tales that teach life lessons. I love working with the people at Everything ALS and also volunteer with Compassionate Care ALS (CCALS) Mothers of ALS and the I Am ALS Legislative Affairs Team. Please get in touch with me at faith@everythingals.org These days, I live a purpose-driven life! I do what I can…WHILE I CAN! 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. I spent 15 years in radio and 25 years in the Music Industry (in Nashville). Through the years, I’ve worked in Finance and Real Estate and owned a bakery! Currently, I live in Baton Rouge, LA. That was what I DID…it wasn’t WHO I AM! I was diagnosed with ALS in 2012…thankfully, it’s a very slow-progressing form. When ALS took my speaking (I slur!), my whole world changed, and I lost my career. For a guy who’s always made his living talking…this is a difficult pill to swallow. But I am more than just my diagnosis! My skill set can STILL be put to good use! Even though MY speech is failing, I try to give ALS Patients a voice! My name is Monica Martinez , and I live in Texas. At 48, I was diagnosed with Bulbar Onset ALS. In late 2019, I noticed trouble enunciating words, which soon turned into slurred speech. As a police officer, my voice was crucial. One day, after speaking on the radio, a fellow officer texted me, asking if I had been drinking because I sounded drunk. This prompted me to seek medical advice. After years of seeing various doctors and undergoing speech therapy, in March 2023, my neurologist gave me devastating news: "Monica, you will never be able to carry your firearm again." I was bewildered. "Monica, you have Bulbar Onset ALS. I'm so sorry. You should get your affairs in order." The diagnosis of ALS was heartbreaking, but giving up my career was even harder. At 49, I was forced into early retirement after 24 years of service. Since my diagnosis, I found solace in the ALS community, realizing I was not alone. This new family provided support, and I reciprocated. Together, we are stronger. 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! I can be reached at monica@everythingals.org My name is Ivonne Vaughn. On April 13, 2024, I was at a lovely church garden party. I tried to step up on a platform with my right leg, it was too weak to support me. I stepped down and stepped up with my left leg. On January 16, 2025, after four MRIs, two X-Rays, one muscle biopsy and three Nerve Conduction Studies (NCS) and Electromyography (EMG) I was diagnosed with limb onset ALS. The Doctor said, “you have ALS,” I said I know I have A Loving Savior. He smiled and said no Amyotrophic Lateral Sclerosis. On the 2.5-hour drive back to our home my husband told me he was 99% certain it was ALS months earlier. He knew about ALS; I had much to learn. I threw myself into getting educated and learning all I could about ALS, available ALS resources/organizations and how to live and accept the incremental changes I was experiencing. I did this by attending a plethora of ALS groups and webinars. In ALS support groups, I see I am not alone and learn about living everyday with ALS. 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. "It is during our darkest moments that we must focus to see the light." - Aristotle "Try to be a rainbow in someone's cloud." - Maya Angelou I can be reached at ivonne@everythingals.org Hi, I’m Chris . I’ve been living with a rare, slower-progressing form of familial ALS since 2014. The name of my diagnosis has changed over time, but what hasn’t changed is learning how to live with it one day at a time. My mom also had ALS, and I walked with her through her journey. At first, I tried to prepare for my own progression by comparing it to what I saw with her. Over time — especially through support groups — I came to understand something important: no two ALS journeys are the same. Knowing this might be part of my future gave me the chance to prepare physically, mentally, and emotionally. We made some good decisions, and like most things in life, there are also things I would do differently. That’s part of the learning. There are positive days and there are heavy days. That’s real. What I’ve learned is that no one should have to navigate those days alone. I’m here to listen, to talk, and to check in. Sometimes just knowing someone understands makes all the difference. Walking beside you — because none of us should face ALS alone. I can be reached at chris@everythingals.org Hi, my name is Tim Fulham . I am from New Orleans, LA and attended school there. After college, I taught high school biology for 8 years but eventually transitioned to a career in pharmaceutical & medical device sales, sales leadership and eventually sales training. Over the years, my work gave me the opportunity to live in New Orleans, Connecticut, New Hampshire, North Carolina, Athens, Greece and London, England. 30+ years later I spent another year back in the high school classroom this time teaching biomedical science before my health forced me into retirement. I have two adult sons, one daughter-in-law and one toddling grandson. I enjoyed great health my entire life, until I was first diagnosed with PLS in March of 2024. After seeing a neuromuscular specialist, my diagnosis was changed to ALS in January of 2025. Becoming a pathfinder has given me the opportunity to share my journey in a way that can help others that have recently been diagnosed. Every day, I am thankful to wake up and engage in a busy, love filled life focused on what I can still do, not what I’m losing the ability to do. I hope that my experiences traveling along this road can help you with your journey. I can be reached at tim@everythingals.org My name is John Hudacek . The day I received my diagnosis, I knew this could be the end or a new beginning. After spending the first three months being scared, I realized that the difference was in my mind and my attitude. So, I decided to look at this chapter of my life differently. Early on I saw that many of us pALS are looking for that ray of light breaking through the drizzling overcast. If you look hard enough, you will find it. I hope to share my life experience to help others find courage and resilience and develop the skills to help us cope while others find that cure. As a veteran, I can assist other vets find the resources that make a difference in this journey. I was diagnosed in November 2021 with a limb-onset, non-dominant arm. Slow progressing, just now starting to weaken my other arm. Now is the time to discover the hidden strength in each of us. I am honored to hold your hand on this journey. You can contact me at johnhudacek@everythingals.org My name is Kathleen McCallum , and for the past two years, I have been helping my friend Willard, who was diagnosed with ALS in 2022. I asked him if he wanted to do a documentary to help him navigate his ALS in a creative way and bring hope. Our Journey of Hope documented the positive steps we took to help Willard’s symptoms, extend his time, and detox his body in hopes of reversing his ALS symptoms. Prior to helping Willard, I fought for my mother when she had breast cancer and, later, level 4 stomach cancer. At the end of her life, she also had Lewy Body Dementia. My dad had Alzheimer’s disease, and we participated in many Alzheimer’s fundraisers as well. I have studied alternative healing since the 1980s, and I am a certified microbiome nutritional coach. My goal is to bring more hope to those suffering from this horrendous ALS disease and to bring more awareness about ALS to the world. There is hope, and if I can help provide it for you, please contact me at kathleen@everythingals.org My name is Shawn Penno. I think my years of work in the field and advocating for workers will translate nicely into helping pALS with their journey. Please reach out if you need someone to 'vent' to, help with problems, or just someone to talk to alleviate the isolation. I live in BC, Canada, and have been a care aide for 25 years, 2 in long-term care and the rest in the Community. I was diagnosed in September '23 with limb onset ALS after 16 months of 'investigating,' with a diagnosis of carpal tunnel, thoracic outlet syndrome, and such. The devastation of hearing THAT Dx—we were hoping for anything but that—really made me soul-search. Do I want to Drop everything and make a bucket list, or…I decided that my work is what really fulfills me; the gratitude I get from my clients is priceless. Work gives me the focus to stay positive and live in the moment. Something I teach in my class is we want to "enable our clients, not disable them.” This has taken on a whole new meaning now that I'm the one becoming disabled! I WANT to do what I can while I still can! I even built my own wheelchair ramp right after my Dx while still having the arm strength to do it! I can be reached at shawn@everythingals.org Siddu (Sridhar) Tummala is the CEO of Cresido Analytics. Here to support people in our community residing in India. If you live in India, please connect for support. Siddu can be reached at siddu@everythingals.org My name is Anthony (Tony) Martin Varela . My better half is named Cheri and we live in Huntington Beach, California. I have two children and two grandchildren with one on the way!! I am a retired Firefighter who worked for the City of Los Angeles. I worked 35 years before Retirement. I love outdoor activities and try to get out and enjoy the fresh air as often as I can. I was diagnosed with ALS in April of 2023. After two years of wondering why I was losing weight and strength, a paramedic friend told me to see a neurologist. After doing so, I received the bad news. 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. I can be reached at tony@everythingals.org My name is Cathy Cummins , like most pALS, I’ve lived an exciting and fulfilling life. And, I’m not done yet. Diagnosed with PLS in 2005, then ALS in 2008, I began a healing journey. In 2004, with left leg symptoms, I needed crutches; in 2005, a chair; and by 2008, a power chair. As a chiropractor, professor, and elite athlete, my life changed dramatically, and I felt lost. In 2009, I passed out on stage while singing with my barbershop quartet. Now, I have swallowing and autonomic issues. This journey is not easy. When I was diagnosed, my team rallied and created a plan that included a physical, chemical, and spiritual approach to healing. I’ve learned so much about myself along the way. I feel like having ALS has offered me a path to discover what life is really about. For me, it's been about balancing my energy, learning to adapt. This wasn’t possible for me to do alone. I believe we are on this journey for a reason, and we are stronger together. If you would like me to share your Journey. Reach out, and I will be a Pathfinder with you. I can be reached at cathy@everythingals.org Hi, my name is Wilbert Greenfield . I am 54 years of age living in Washington DC. Living with ALS has taught me resilience and the importance of cherishing every moment. I navigate daily tasks with creativity and adaptability, finding joy in small victories and milestones. I am passionate about raising awareness for ALS, advocating for research funding, assistive technologies, and supporting fellow ALS warriors and their families. Through sharing my story and experiences, I strive to inspire hope and promote understanding of this complex disease. My faith anchors me. When my body failed, I learned to rely on something greater. Surrendering to God’s will gave me a new freedom. My physical limitations stripped distractions, leaving me with a profound connection to Jesus. ALS taught me faith—trusting in His promises despite uncertainty. I find strength and peace in knowing my worth isn’t defined by my abilities, but by my identity in Christ. God’s plan is perfect, and His love is abundant. My body may decline, but my spirit soars, supported by God’s unconditional love. I can be reached at will@everythingals.org Pathfinders Emeritus I’m Michael Montemayor , and I have a wife and three kids. We live in Washington State. I graduated from Washington State University in 2003 with a business degree. I was diagnosed with ALS in July 2023 . A lot has changed for me and my family since my diagnosis. I struggle to do some of the everyday simple tasks, but there are still a lot of things I can still do. What keeps me going is my trust in God, knowing He has a plan for me and that He is in control, which gives me peace. I also have lots of help and support from family and friends. My plan is to keep fighting against ALS and not let it control my life. I have met lots of other ALS patients who have been a blessing to me, and I hope to be able to help others with ALS as well. God Bless!! My name is Doug Hill. I am 47 years old and a father of three daughters, ages 16, 14 and 12. I am a Cornell Chemical Engineer graduate, class of ’99, and have been working full time at a specialty chemical company for 26 years now. My wife is a middle school Spanish teacher. I was diagnosed with bulbar onset ALS in January of 2024. I love playing and watching sports – from football, baseball, basketball, tennis and golf to downhill skiing (my main passion!). As a family, we also enjoy small venue music concerts with artists that really connect with the audience. Since my diagnosis, I have needed to adapt continuously during my journey. It’s like a puzzle always needing a solution! There is one thing that doesn’t and will never change – my fight, my grit, my determination and my unwavering hope. 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.

Past Events Unlocking the Origins of ALS Through Large-Scale Patient Data Virtual Event Details Fireside Chat with Pathfinders Apr 8, 2026 Virtual Event Details Which Cells Drive ALS? New Strategies for Designing Targeted Therapies Virtual Event Details Citizen Research on Mar 18th Virtual Event Details Fireside Chat with Pathfinders Mar 11, 2026 Virtual Event Details The PREVAiLS Study: Pridopidine for the Treatment of ALS Virtual Event Details HopeUntangled Virtual Event Details Fireside Chat with Pathfinders Feb 11, 2026 Virtual Event Details A New Diagnostic Biomarker for ALS with Dr. Sandra Banack and Dr. Rachael Dunlop Virtual Event Details To Kill a Motor Neuron: Model systems in the lab to understand ALS in the clinic with Dr. Stephen Kolb Virtual Event Details Fireside Chat with Pathfinders Jan 14, 2026 Virtual Event Details Chloroviruses in ALS with Dr. Gary Pattee Virtual Event Details 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 Load More

Dont' miss an event, watch the past ALS Talk series from worls renowned ALS Experts Subscribe to Youtube channel Videos All Categories Play Video Play Video 01:36:01 Citizen Research, March 18, 2026 Welcome to a new session of Citizen Research with Dr. Terry Heiman-Patterson and Dr. Lyle Ostrow. In this session, we explore a new format from EverythingALS focused on Citizen Research — an interactive, community-driven approach to understanding and interpreting ALS science together. We are joined by two longtime leaders in ALS clinical care and research, Dr. Terry Heiman-Patterson, neurologist and Director of the MDA ALS Center of Hope at Temple University, and Dr. Lyle Ostrow, neurologist, researcher, and Director of the Neuromuscular Pathology Lab at Temple University. Together, they guide a dynamic discussion designed to help patients, caregivers, and the broader ALS community become more informed and empowered consumers of scientific information. This session focuses on how to navigate the rapidly evolving ALS research landscape — where new findings, trials, and headlines emerge almost daily — and how to critically evaluate what they mean. In this talk, we cover: • What “citizen research” means and why it matters in ALS • How to interpret scientific announcements, trial results, and emerging therapies • Common challenges in understanding ALS research and clinical trial data • How to distinguish signal from noise in a fast-moving research environment • The importance of collaboration between clinicians, researchers, and the ALS community • How patients and caregivers can engage meaningfully in research conversations As ALS research continues to accelerate, building a shared understanding across the community is essential. Sessions like this aim to bridge the gap between complex science and real-world impact — empowering everyone to participate in the journey toward effective treatments and, ultimately, a cure. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #CitizenResearch #ALSAdvocacy #NeurodegenerativeDisease #ALSScience #ClinicalTrials #ALSAwareness #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward. Play Video Play Video 01:05:41 The PREVAiLS Study: Pridopidine for the Treatment of ALS Welcome to another compelling episode of #ExpertTalk by EverythingALS. * This presentation is intended for the US audience. In this session, we are joined by Nil Confer, PhD, Executive Medical Director at Prilenia Therapeutics, and Sabrina Paganoni, MD, PhD, Harvard Medical School and Massachusetts General Hospital, to discuss the PREVAiLS Study, a Phase 3 clinical trial investigating pridopidine as a potential treatment for ALS. Dr. Confer introduces the science behind pridopidine, an investigational therapy that activates the sigma-1 receptor, a cellular pathway believed to play an important role in neuronal health and neuroprotection. He explains how this receptor helps regulate cellular stress responses, protein folding, and mitochondrial function — all processes that can be disrupted in neurodegenerative diseases like ALS. Dr. Paganoni then reviews findings from the HEALEY ALS Platform Trial (Regimen D), where pridopidine was previously studied. While the primary endpoints were not met in the overall population, exploratory analyses suggested potential benefits in people with early-stage ALS (within 18 months of symptom onset) and definite or probable ALS diagnoses, particularly in respiratory and bulbar function measures such as speech. These insights informed the design of the global Phase 3 PREVAiLS trial, which will enroll approximately 500 participants and evaluate functional outcomes over a 48-week placebo-controlled period followed by an open-label extension. In this talk, we cover: • What pridopidine is and how it targets the sigma-1 receptor • Why this cellular pathway may be important for motor neuron protection • Key findings from the HEALEY ALS Platform Trial • How those results shaped the design of the PREVAiLS Phase 3 study • Eligibility criteria and what participation in the trial involves • The importance of global collaboration in advancing ALS therapies Clinical trials like PREVAiLS are a critical step in the effort to develop new treatment options for ALS. By bringing together researchers, clinicians, and the ALS community, studies like this help move promising therapies through the development pipeline and closer to potential approval. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #NeurodegenerativeDisease #ALSScience #ALSAdvocacy #MotorNeuronDisease #ALSAwareness #ALSUpdates #ALSExperts #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward. Play Video Play Video 01:09:51 Chloroviruses and ALS with Dr. Gary Pattee Welcome to another compelling episode of #ExpertTalk by EverythingALS. In this session, we are joined by Dr. Gary Pattee, who explores a fascinating and emerging area of ALS research: the possible role of chloroviruses in neurodegenerative disease. Dr. Pattee walks us through how these extremely common viruses, which most humans are exposed to through water and the environment, may interact with the nervous system in ways that are only now beginning to be understood. This discussion challenges conventional thinking about ALS by examining whether infectious or environmental factors could play a role alongside genetics and other known risks. In this talk, we cover: • What chloroviruses are and how humans are exposed to them • Why these viruses are being studied in connection to cognitive and neurological function • What current research suggests about their possible link to ALS • What remains unknown and what future research needs to explore • How this fits into the broader search for ALS causes and treatments This is not about drawing premature conclusions. It is about asking important questions and opening new avenues of scientific inquiry that could one day help explain why ALS develops in some people and not others. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #ALSCommunity #NeurodegenerativeDisease #ALSScience #ALSAdvocacy #MotorNeuronDisease #ALSAwareness #ALSUpdates #ALSExperts #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward. Play Video Play Video 01:32:22 HopeUntangled, February 18, 2026 Welcome to our inaugural HopeUntangled Session, recorded on February 18, 2026. In this session, we are joined by Dr. Richard Bedlack, Dr. Michael Robinson, Dr. Terry Heiman-Patterson, and Dr. Lyle Ostrow - each bringing the conversation about ALS research directly into your living room. Together, they share insights on what this series is all about: grounding hope in evidence, and learning how to do so. Covered is this session were topics such as: • "Anatomy of Press Release: Moving Beyond the Headline" with Michael Robinson, MD - a practical guide to decoding clinical trial updates, distinguishing data from interpretation, and evaluating risk alongside potential benefit. • The realities and limitations of CRISPR and gene editing for C9-related ALS. • Questions around methylcobalamin (B12) injections, fecal transplant research, and compassionate use pathways. • How AI is beginning to shape ALS research - from identifying patterns in complex datasets to improving how patients may be paired with clinical trials. Next Session Wednesday, March 18, 2026 Register Here: https: //rnrli.share.hsforms.com/2H-mHZrbGTxSIEUtj29grug Submit your questions here: https://rnrli.share.hsforms.com/2SvHcksygSnau0lCFtfm2bw *If you registered for "All Sessions" previously, you do not need to register again. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #GeneTherapy #PrecisionMedicine #ALSCommunity #MotorNeuronDisease #ALSScience #ALSAdvocacy #ALSAwareness #ALSUpdates #ALSExperts #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward. Play Video Play Video 01:10:38 To Kill a Motor Neuron: Model systems in the lab to understand ALS in the clinic Welcome to another compelling episode of #ExpertTalk by EverythingALS. In this session, we are joined by Dr. Stephen J. Kolb, Director of the ALS and Motor Neuron Disease Multidisciplinary Clinic and Research Program at The Ohio State University Wexner Medical Center, and Professor of Neurology and Biological Chemistry and Pharmacology at Ohio State. Dr. Kolb shares insights from the front lines of ALS research and clinical care, focusing on how advances in molecular biology and gene therapy are shaping the future of treatment for people living with ALS. Drawing from both his laboratory and clinical experience, he explores how understanding the genetic and cellular mechanisms of motor neuron disease is opening new pathways for targeted therapies. This talk highlights the evolving role of precision medicine in ALS, the importance of patient-derived models, and the challenges and opportunities involved in translating research discoveries into real-world clinical care. In this talk, we cover: • How molecular and genetic research is advancing our understanding of ALS • The role of patient-derived models in studying motor neuron disease • Progress and challenges in developing targeted gene therapies • What it takes to move discoveries from the lab to the clinic • How clinical trials are shaping the future of ALS treatment This session offers a powerful look at how science, medicine, and patient-centered research come together to drive innovation and hope in the ALS community. 📲 Download the EverythingALS App • Google Play: http://bit.ly/4nXqIYy • App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► X: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #EverythingALS #ALSResearch #GeneTherapy #PrecisionMedicine #ALSCommunity #MotorNeuronDisease #ALSScience #ALSAdvocacy #ALSAwareness #ALSUpdates #ALSExperts #CollaborativeScience 🔔 If you are passionate about advancing ALS research and understanding, like, subscribe, and turn on notifications. Sharing this episode helps expand awareness and keeps important scientific conversations moving forward. Play Video Play Video 01:03:26 Healey ALS MyMatch: Overview & Update Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Suma Babu, Co-Director, Neurological Research Institute, Massachusetts General Brigham and Associate Professor of Neurology, Harvard Medical School Dr Babu discussed: • Big picture: This talk introduced Healey ALS MyMatch, a new approach to running faster, smarter early-phase ALS clinical trials by focusing on biology, biomarkers, and patient-centered design. • Why it matters: MyMatch aims to reduce trial delays, improve access, and increase the chances of identifying promising treatments by better matching people living with ALS to the right studies. • What’s happening now: The program has already launched its first trial and is building a growing pipeline of additional therapies, with more studies expected in the near future. • What participants should know: MyMatch is designed for people with ALS who meet specific eligibility criteria, while expanded access programs and other pathways remain important options for those who do not qualify. 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #HealeyMyMatch 🔔 If you're passionate about advancing ALS care and research — like, subscribe, and turn on notifications. 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EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. The ALS Gene Carrier Study Asymptomatic person with a known ALS Gene We are looking for individuals who are Gene Carriers of ALS and Asymtomatic - not diagnosed with ALS We are enrolling for a study motivated by the need for monitoring and early detection of motor and speech changes using advanced computational technology . By participating in this study, you will contribute to further improve current assessment of individuals with the Asymptomatic ALS gene using physiological signals and objective measurements. This study is entirely remote, allowing you to participate from the comfort of your home at a time that suits you. Our goal is to sensitively detect early motor and speech changes in ALS using a multimodal monitoring approach. We will measure gait and balance, speech, and upper limb function using sensors. This study is conducted in partnership with Massachusetts General Hospital and Harvard Medical School with a generous support from ALS Finding a Cure . Your connection to ALS I am interested to participate in * Required The Speech Study to advance drug trials The ALS Gene Carrier Study More Info click here Are you enrolled in PREVENT ALS Study (DIALS) or ALS Families Study? Yes No Don't Know Do you use Assistive Devices ? For Walking For Breathing CPAP Other Cane Rollator Walker Wheelchair Other Women Men What is your t-shirt size? Country Submit

About Us We believe the technology will be a key enabler for the innovation to end ALS, we are here to bridge the gap between patients, research and technology. Our diverse team is composed of patient advocates, students, nurses, physicians, entrepreneurs, artificial intelligence engineers, biologists, ALS patients, and spiritual guidance from one person who has reversed ALS. We are here to help provide information to all of those affected by ALS. EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts -- from care to cure -- for people with ALS, by offering a open-data platform for direct engagement with patients, caregivers, researchers and drug companies. PC: Peter Cohen How YOU Can Get Involved Write to us, we would love to hear from you. How did you hear about us? How did you hear about us? How did you hear about us? Submit

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

Ask anything for People with ALS and Caregivers to help with ALS care to cure Future Events Expert Talks Series Fireside Chats Fireside Chat with the Pathfinders Wed, May 06 Virtual Event REGISTER