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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

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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.

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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.”

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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.

MARCH 2024

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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. 

JANUARY 2024

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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. 

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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.

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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. 

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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.

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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.

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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.

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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.

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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. 

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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.

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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.

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JULY 2023

“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.”

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JULY 2023

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.

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JUNE 2023

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.

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APRIL 2023

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.

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JUNE 2023

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.

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JUNE 2023

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.

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JUNE 2023

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. 

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JUNE 2023

"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.

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JUNE 2023

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."

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JUNE 2023

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.

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JUNE 2023

Indu Navar, founder of EverythingALS, joins Amy & JJ. And, just in time for the Fargo walk. 

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APRIL 2023

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.

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APRIL 2023

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.

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APRIL 2023

"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"

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APRIL 2023

“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?

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MARCH 2023

STUDY SEEKS TO IMPROVE ALS DIAGNOSES WITH AI
Speech recognition patterns can give clues to neurological conditions

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.

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FEBRUARY 2023

Learn about the ALS journey of local resident Tommy Culpepper and find out you can support him!

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KNWA & FOX24 - Northwest Arkansas & River Valley News + The ALS Association Arkansas Chapter

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FEBRUARY 2023

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.

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JANUARY 2023

"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.

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JANUARY 2022

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.”

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DECEMBER 2022

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.

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DECEMBER 2022

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.

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NOVEMBER 2022

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.

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NOVEMBER 2022

Indu Navar, founder of EverythingALS, joined us to talk about how your participation helps raise funds and awareness.

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NOVEMBER 2022

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.

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SEPTEMBER 2022

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.

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OCTOBER 2022

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.”

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SEPTEMBER 2022

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...

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AUGUST 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.

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.

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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.

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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.

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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.

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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...

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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.

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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

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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.”

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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.

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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...

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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....

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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.