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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

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

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

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. ALS Radcliff Study : Multi-disciplinary focus We are looking for Individuals with early symptom who have been diagnosed with Possible, Probable or Definite ALS Our IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology. By participating in this study, you will contribute to a growing large ALS dataset and further improve current assessment & treatment of individuals diagnosed with ALS using physiological signals and objective measurements. Your connection to ALS I am interested to participate in * Required The Speech Study to advance drug trials The Radcliff : Multi-disciplinary Study The ALS Gene Carrier Study Are you enrolled in PREVENT ALS Study (DIALS Network at MGH/WashU or ALS Families Study at Columbia University)? Yes No Don't Know For more information click here . Do you use Assistive Devices ? For Walking For Breathing CPAP Other Cane Rollator Walker Wheelchair Other What is your shoe size? Women Men What is your t-shirt size? Country Submit What is the purpose of the study? This is a fully remote, observational, exploratory, non-controlled, non-drug study in people with Amyotrophic Lateral Sclerosis (ALS). The study seeks to explore whether specific digital measures gathered at home warrant further investigation as tools for monitoring clinical function and disease progression in ALS. This study is completely remote - all assessments will be completed in your home. The necessary equipment for the study will be sent to your house, which includes: spirometers for breathing tests feet sensors for walking analysis and an android smartphone EverythingALS mobile App will make it easy for you to navigate the study. The format consists of weekly ALS-FRS-R & proctors sessions with a research co-ordinator Your total participation will be 9-12 months Any gender, age 18 Years and older Diagnosed with possible, probable, or definite ALS by a neurologist Able to walk without help (without using a cane or walker. Ankle-foot orthotics (AFO) are allowed, as long as the study sole inserts can be accommodated within their shoes. Are comfortable going up and down stairs without help safely. Use of hand railing is permitted and encouraged Exclusion Criteria: Inability to read, understand, and speak English Use of a ventilator, or non-invasive mechanical ventilation for more than 16 hours daily The full list of requirements for the study can be discussed with the study coordinator What is the eligibility criteria? What procedures will I participate in if I enroll in the study? How long will I be in the Study? Protocol Number: 2022-09-RAD-PI42 | Sponsor: Peter Cohen Foundation Contact Us Email: rad@everythingals.org

Listen to all the episodes on Spotify Subscribe to the Youtube channel Podcast Video Channel Name Play Video Play Video 00:23 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:32 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:29 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:31 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:23 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:32 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:29 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Play Video Play Video 00:31 Video Title This is a great space to update your audience with a description of your video. Include information like what the video is about, who produced it, where it was filmed, and why it’s a must-see for viewers. Remember this is a showcase for your professional work, so be sure to use intriguing language that engages viewers and invites them to sit back and enjoy. Load More Episode #1: Misdiagnosed! With guest Richard Sperry In this episode, Our guest is Richard Sperry who was misdiagnosed with ALS. We will take you through Richard's long journey of getting diagnosed, how he got a new diagnosis of MMN, and what he has chosen to do with his knowledge from his experience. Episode #2: ALS and the Wild Wild West of Medicine with Neil Olson In this episode, Lisa and McFinn are joined by Neil Olson, whose father lost his battle to ALS in 2020. We will take you through Neil’s journey with his father, the treatments they tried, and what he has chosen to do with the knowledge from his experience. Neil also talks about his advocacy work and efforts with EverythingALS. Episode #3: A Wife's Journey with ALS In this episode, we are joined by Nadia Sethi, who lost her husband, Sundeep Sethi, to ALS in 2021. Nadia talks about Sundeep’s life with ALS and her role as caregiver. We will take you through Nadia’s journey with her husband, how she kept her spirits up, and her champions throughout this experience. Episode #4: In Honor of My Dad, Dan Diaz In this episode, Lisa and McFinn are joined by Sarah Diaz, who lost her father, Dan Diaz, to ALS in 2019. We will take you through Sarah’s journey with her father, what role she took on to help him, and how she honors him today. Sarah is currently studying to be a MD, PhD specializing in neurology. Episode #5: My Journey to CEO of EverythingALS In this episode, we are joined by the CEO and Founder of EverythingALS, Indu Navar. Indu is a Silicon Valley entrepreneur, investor, and an unstoppable force, who started EverythingALS after losing her husband, Peter Cohen, to ALS in 2019. We will take you through Indu’s journey with her husband, the treatments they tried, and her vision for changing the face of ALS. Episode #6: A Brothers Legacy, A Sister’s Love In this episode, we are joined by are joined by Deb Fabricatore, who has been an ALS advocate for many years after losing her younger brother, Johnny, to ALS. We will take you through Deb’s journey with her brother, how she helped him, and how she also kept her spirits up throughout his diagnosis. Deb also talks about how she got involved with EverythingALS and her contribution to our research project. Episode #7: From Tragedy to Triumph with Lisa Deegan In this episode, McFinn Lovere interviews Lisa Deegan, his co-host and team member at EverythingALS. Lisa lost her younger brother John Pecoraro to ALS in 2018. We will take you through Lisa’s journey with her brother, their challenges, and how she became an advocate for ALS. She talks about turning her tragedy into positive actions and now puts her energy into EverythingALS to help others. Episode #8: Why ALS is Unresolved with Murgesh Navar In this episode, Lisa and McFinn are joined by Murgesh Navar, who lost his brother-in-law, Peter Cohen, to ALS in 2019. Murgesh is a Silicon Valley entrepreneur, who is passionate about finding a cure for ALS after seeing his sister, Indu Navar, care for her husband and face the challenges of ALS. Episode #9: ALS Reversal #42 with McFinn Lovere In this episode, Lisa Deegan interviews her co-host McFinn Lovere, who experienced a rare ALS reversal. His case is documented and is studied as ALS reversal #42 at Duke University. We will take you through McFinn’s unique journey with ALS, how he recovered, and what his important role as an ALS advocate on the EverythingALS team means to him. McFinn shares details of his role dedicating his time to helping others throughout their ALS journey. Episode #10: Biomarkers Lead To Results with Dr. Aria Anvar In this episode, Lisa and McFinn are joined by Dr. Aria Anvar, who has been a practicing physician for more than 22+years. Dr. Anvar brings his expertise as Principal Investigator on the EverythingALS Digital Biomarker Voice research study. In this podcast, we will take you through our citizen-driven research to help develop biomarkers as well as commercialized tools for measuring clinical endpoints in ALS. The goal of this research is to expedite clinical trials and eliminate the need for placebos. Dr. Anvar shares his thoughts on changing the paradigm of the ALS condition. Episode #11: Dying Out Loud with Dave Warnock and Bevin Jett In this episode, Lisa and McFinn are joined by Dave Warnock, who was diagnosed with ALS in 2019 and his partner and caregiver, Bevin Jett. We will take you through Dave’s journey of getting a diagnosis and how he spends his limited energy living with ALS with Bevin by his side. Dave and Bevin open up about what they’ve learned and the important role as a caretaker that Bevin plays in Dave’s life. Dave and Bevin also share their advocacy work with EverythingALS, and the importance of connecting with others in this journey. Episode #12: Community and ALS with Shea Harden In this episode, Lisa and McFinn are joined by Shea Harden who is an amazing ALS advocate. We will take you through Shea’s journey with her younger brother, Graham, who just recently passed away from ALS. Shea was instrumental in helping her brother by fundraising, getting disability benefits, finding qualified medical care, and working through the tracheotomy process. Shea opens up about the importance of community, and how to not be afraid of asking for help. Episode #13: Fashionably Fighting ALS with Dr. Richard Bedlack In this episode, McFinn and Lisa are joined by a world renowned neurologist, Dr. Richard Bedlack, professor of neurology at Duke University and director of the Duke ALS Clinic. In his more than 23 years of experience, he has seen over 3,000 patients living with ALS. He is also well known for creating the Duke ALS Clinic in 2001. Episode #14: Stories and Innovation in ALS: Audio Visual Assessments for ALS with David Suendermann-Oeft In this episode, Lisa and McFinn are joined by David Suendermann-Oeft, founder and CEO of Modality.a.i. Modality.ai has developed a conversational software program that can be used remotely by anyone with a computing device that produces accurate metrics of facial and speech behaviors that are predictive of neurological diseases like ALS. Modality is paving the way for more efficient, effective, less costly clinical trials. Episode #15: Passion, Perseverance, and Advocacy with Austen Eadie-Friedmann In this episode, Lisa and McFinn are joined by Austen Eadie-Friedmann, who -- still only in his 30s -- got diagnosed with ALS in 2019. We will take you through his long journey to get diagnosed, his daily challenges, and how he feels the drug development paradigm needs to be changed. He also talks about treatments and the need for access to world-class healthcare for patients. Episode #16: Keep On Ticking with Maggie and Dr. Hira Ahluwalia In this episode, Lisa and McFinn are joined by Dr. Hira Ahluwalia and his wife, Maggie. Hira talks about his journey with ALS, how it took 3.5 years to get a diagnosis, and what he thinks might have contributed to getting this disease. Episode #17: My Dedication to ALS with Dr. Merit Cudkowicz. In this episode, Lisa and McFinn are joined by Dr. Merit Cudkowicz who has over 25+ years working in ALS. Dr. Cudkowicz is the Chief of the Massachusetts General Hospital Neurology Service, Director, Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and the Julieanne Dorn Professor of Neurology at Harvard Medical School in Boston. Episode #18: I can’t Look Away with Allison Bulat. In this episode, Lisa and McFinn are joined by Allison Bulat who lost her first husband, Jeff Pogmiller, to a fast progressing bulbar onset of ALS. We will take you through Allison’s journey along Jeff’s side as his primary caregiver and also her advocacy efforts and how she has not turned away from helping others with this devastating disease. Episode #19: Detoxification & Biochemical Resilience with Dr. Shade In this episode, Lisa and McFinn are joined by Dr. Christopher Shade, who is the CEO and Founder of Quicksilver Scientific. We will take you through what Dr. Shade and Quicksilver Scientific have created to help rid the body and mind of toxins that impair mind and body function. Dr. Shade will walk us through his solutions on restoring a balanced system to help you get rid of toxins and attain a state of wellbeing. Episode #20: ALS has not Defined Us with Lori and Brian Andre. In this episode, Lisa and McFinn are joined by Lori and Brian Andre. Brian has slow progressing ALS, he was diagnosed in 2016 after 2 years of symptoms. They have been married for 40 years and are huge assets to the ALS community, working on community outreach and education for clinical trials with I AM ALS. Episode #21: Pursuit of Happiness with Mayuri and Mayank Saxena In this episode, Lisa and McFinn are joined by Mayuri and Mayank Saxena. Mayuri was diagnosed with ALS 2.5 years after the onset of symptoms, at the young age of 32. Mayuri is joined by her brother Mayank, who has been instrumental throughout her journey even though they are bi-coastal. Episode #22: Nutrition Essentials for ALS In this episode, Lisa and McFinn are joined by Coco Newton, MPH, RD, CNS who is a Registered Dietitian & Certified Nutrition Specialist. Coco works with each individual, helping them to understand their unique circumstances, belief systems, personal/spiritual strengths and challenges. She will tailor a program that more realistically addresses your nutritional needs and expectations. Coco has a lot of passion in working with many people diagnosed with ALS over the years to help them with their nutritional needs. Episode #23: Not Going Quietly with Ady Barkan and Rachael King In this episode, Lisa and McFinn are joined by American healthcare activist and lawyer Ady Barkan. Ady was diagnosed with ALS shortly after the birth of his son Carl, at the young age of 32. He joins us with his wife Rachael King by his side. Rachael is the mother to their two young children, Carl and Willow. She is a professor at UCSB and manages to balance motherhood, working, and being the pillar of strength for their family. Episode #24: Her ALS Story In this episode, Lisa and McFinn are joined by guests Leah Stavenhagen, Sunny Brous and Macey Hoaglund, who all have something in common - they were diagnosed with ALS in their late 20’s. They part of Her ALS Story, which is a group of women all diagnosed with ALS before their 35th birthdays.

EAP EverythingALS EAP Extended Access Program Lorem ipsum dolor sit amet consectetur adipisicing elit. Maxime mollitia, molestiae quas Come to our event First name Last name * Email Register Lorem ipsum dolor sit amet consectetur adipisicing elit. Maxime mollitia, molestiae quas vel sint commodi repudiandae consequuntur voluptatum laborum. Lorem ipsum dolor sit amet consectetur adipisicing elit. Maxime mollitia, molestiae quas vel sint commodi repudiandae consequuntur voluptatum laborum numquam blanditiis harum quisquam eius sed odit fugiat iusto fuga praesentium optio, eaque rerum! Provident similique accusantium nemo autem. Veritatis obcaecati tenetur iure eius. Veritatis obcaecati tenetur iure eius earum ut molestias architecto voluptate aliquam nihil, eveniet aliquid culpa officia aut! Impedit sit sunt quaerat, odit, tenetur error, harum nesciunt ipsum debitis quas aliquid.Reprehenderit, quia. Quo neque error repudiandae fuga? Lorem ipsum dolor sit amet consectetur adipisicing elit. Maxime mollitia, molestiae quas vel sint commodi repudiandae consequuntur voluptatum. Come to our event First name Last name Email* Phone How many will you be? How will you attend? Register

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. A patient-focused non-profit bringing technological innovations and data science to support efforts, from care to cure, for people with ALS. Our Research > Latest News > Next ALS Expert Event > Download the EverythingALS App ALS is a neurodegenerative disease with no treatments . Every 90 minutes someone is diagnosed The Power of Together Take action, Join this mov e me nt This map represents our strong growing ALS community across 44 countries How did you hear about us? Submit Contact Care to Cure for ALS EverythingALS is a patient-focused non-profit 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. Care for People living with ALS As patient advocates, we host bi-monthly community meetings that are designed to provide patients and caregivers with the support and information that they will need throughout their ALS journey. Meet our teammate, McFinn Lovere, Spiritual Guide and ALS Reversal #42. His blogs are inspiring, and can be accessed by clicking the link below. https://mcfinn.medium.com/ Finding a cure for ALS Technology will be the key enabler for the innovation to end ALS. We support efforts to find a cure for ALS by creating a platform for direct engagement with patients, researchers and cutting edge Cloud and AI technologies. Sponsored Projects Develop speech analysis - audio and facial metrics - for early detection, clinical endpoints and better voice recognition tools for ALS in collaboration with MIT, MGH, UT Austin and Google. Funding for the first ALS Platform trial at Mass General by Dr.Merit Cudkowitz. Supporting AnswerALS and Gladstone Institute with multi-omics analysis with machine learning and big data to uncover ALS causes, subtypes, pathways, and drug targets. EverythingALS Join us on Social Media There are many ways to be involved and engaged on day-to-day conversations Join our active Facebook group. We share all our important events, research and day-to-day annoucements Follow us on twitter. We will regularity tweet announcements and research findings. Follow us on Instagram where our advocates and students share inspiring stories. Join our LinkedIn group. We will share active research ideas and dialogue. Subscribe to our YouTube channel. We will post our ALS Talk series content on YouTube channel. As seen on