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ALS is a brutal neurodegenerative disease (PC: York Rehab Clinic) ALS is a brutal neurodegenerative disease impacting the complete mobility of the affected individuals with extreme muscle weakness and loss of voluntary movement. The onset of ALS is a gradual process, and manifests as different stages of ALS based on the severity of the disease and the course of treatment. Let’s understand the different stages of ALS in this article and how it impacts the people living with ALS in this article.   Introduction to ALS What does ALS stand for? ALS, a progressive degenerative disease stands for Amyotrophic Lateral Sclerosis, severely impacting the mobility and muscle control, deteriorating the ability for elementary activities such as eating, speaking, and breathing. Decoding “Amyotrophic Lateral Sclerosis” further, Amyotrophic comes from the Greek language, with ‘myo’ referring to muscles, ‘trophic’ meaning nourishment and ‘A’ meaning without, thereby implying ‘no muscle nourishment’. The word ‘Lateral’ refers to the specific part of the spinal cord containing particular nerve cells responsible for signalling and muscle control. With degeneration of this region, the outcome is scarring or hardening of the specific region, known as ‘Sclerosis’.   Understanding the ALS disease ALS, also known as Lou Gehrig’s disease, has a gradual onset, with the early signs and symptoms mimicking several other neurodegenerative diseases or issues with the muscle, or spine, causing early ALS diagnosis difficult. Generally, ALS diagnosis takes about 12 – 15 months to confirm considering the gap for recovery and process of eliminating other diseases. With the average life span from onset to progressing through different stages of ALS till death is about 3 – 5 years ( 1 ) . This emphasizes the importance of early ALS diagnosis to manage ALS treatment for better life expectancy. While determining the exact cause of ALS is a complicated process, it involves genetic mutations and unusual environmental factors leading to sporadic cases of ALS without a clear cause. While the mechanisms are not clear, the occurrence of abnormal protein levels and neuron damage are observed in the progression of ALS disease. The journey of every patient living with ALS is unique, and the pace of progression can vary for each based on the onset, genetic factors and initiation of treatment.   Summarizing different stages of ALS (PC: ALS News Today) Different stages of ALS ALS onset may present differently for each  affected individual, and the different stages of ALS progression will also change according to the age, genetics, sex and lifestyle in certain cases. ALS diagnosis is typically confirmed once muscle weakness progresses beyond the more subtle preliminary signs. Usually, the average life expectancy of ALS patients is 2 – 5 years after diagnosis. (   2  ) However, with treatment and personalized care tailored to the progression of the different stages of ALS, quality of life can be improved significantly. The different stages can be categorized as early stages, advanced stages and end stages. The early stages of ALS consist of muscle weakness and twitching. The disease progresses with respiratory and motor impairments in the advanced stages, and ultimately leading to complete loss of motor function and respiratory failure in the end stages. Awareness of the different stages of ALS helps caregivers better understand the condition of the person living with ALS (pALS) and support them with informed care choices. Let’s take a closer look at the different stages of ALS and get an overview on managing ALS disease better.   Stage 1: Early Muscle Weakness and Twitching The early stages of ALS have common symptoms indicating muscle weakness and twitching mimicking other diseases. It starts subtly impacting the functioning of arms and legs with difficulty in fine motor tasks such as buttoning shirts. Muscle twitching, cramping, and frequent tripping is also observed in the early stages of ALS. The people living with ALS can also experience muscle stiffness increasing the discomfort and impacting mobility. Some of them can also have minor difficulty swallowing or slurred speech for patients whose bulbar muscles are affected in the early stages of ALS. While recognizing these early signs as ALS diagnosis is challenging, early intervention with medication and physical therapy can delay the disease progression.   Stage 2: Progressive Muscle Weakness The second stage of ALS worsens the muscle weakness and the individual affected finds doing the daily tasks hard. The people living with ALS are struggling with movement, balance, coordination and simple tasks to upgrade their difficulty level. The worsening muscle atrophy and losing strength makes mundane muscle tasks such as walking, standing, controlling hand movement difficult, and individuals can experience frequent falls. The quality of life can be improved by using assisting devices and making it possible to adapt to the changes in mobility. The caregivers need to make care choices considering muscle weakness and atrophy, communication and respiratory issues and decline in physical function.   Stage 3: Intermediate Functional Impairment Progressing through different stages of ALS, the intermediate functional impairment involves significant challenges. With severe muscle weakness and atrophy, mobility is limited, making walking and standing challenging without support. Further, the swallowing and speaking problems have aggravated with increased risk of choking. The people living with ALS may also have weakened muscles causing difficulty in breathing, which leads to exhaustion and shortness of breath doing mundane activities. The quality of life can be enhanced with assistance devices paired with medicine and physical therapy for easy management of ALS.   Stage 4: Advanced Functional Decline This is one of the stages of ALS where the people living with ALS can have independence in mundane and routine activities with assistive devices only. This phase worsens the ability to communicate which can be resolved with using speaking aids. The affected person would require breathing support with aids to manage needs, ensure comfort and safety. The progression of ALS disease can vary from person-to-person based on genetic factors and the age at which the first signs and symptoms appear. When going through the advanced stages of ALS, the assisted devices for mobility, communication and breathing are essential.   Stage 5: Advanced Medical Care One of the advanced stages of ALS, stage 5 requires definite attention of caregivers with advanced medical care for the person living with ALS to function. Beyond the ALS medication and physical therapy, this phase requires caregivers to render emotional support and psychological tapping to motivate the people living with ALS to fight through the brutal challenges of the disease and continue receiving medical care. At this stage, the patient might require feeding tubes to cope with complete chewing impairments.   Stage 6: Severe Impairment The sixth stage is the intermediate phase from advanced to end stages of ALS with severe impairment. The people living with ALS can barely move, with extremely minimal voluntary control, impacting the competence for most functions of the body. Eventually, this leads to muscle paralysis and severe breathing issues. This stage could last from a few weeks to months, based on the specific progression of the disease. The respiratory functioning is critically damaged, swallowing is also impossible, leading to complete dependence on feeding tubes. The people living with ALS might have cognitive function, but complete physical dependence on the caregivers with 24*7 intervention. The objective at this stage is to mentally support the affected patients and improve their quality of life.   Stage 7: End-Stage ALS The end stage of ALS remarks complete loss of mobility, leading to muscle paralysis and respiratory failure. The people living with ALS can only control eye movements for communication. The patients are completely dependent on life-sustaining support and interventions such as ventilators and feeding tubes. All the stages of ALS lead to the end-stage with life expectancy for ALS patients limited to a few months till complete respiratory failure causes death.   Conclusion ALS is a brutal neurodegenerative disease impacting the mobility of the affected people, taking away complete voluntary control with the declining progression of the disease. When ALS diagnosis is confirmed, it is crucial to understand the stages of the disease with the current condition for personalized care options. The early stages of ALS cause muscle weakness and twitching. The condition worsens in the advanced stages of ALS with respiratory and motor impairments, eventually leading to complete loss of voluntary functions, respiratory failure and muscle paralysis by the end-stage. The different stages of ALS require personalized intervention based on the gradual decline in health and response to treatment – physical therapy and ALS drugs. As ALS disease progresses further, assisted devices are required for communication, feeding, mobility and ultimately to support respiratory function.

Leveraging Tofersen for SOD1 ALS treatment INTRODUCTION: The advancements in  ALS treatment particularly for genetic forms like SOD1 ALS have opened new avenues for disease stabilization and functional recovery. Tofersen, an antisense oligonucleotide therapy, is at the forefront of this transformation, showing promise in reducing neurofilament levels, slowing disease progression, and improving certain patient outcomes. Alongside pharmaceutical interventions, neuromuscular rehabilitation is emerging as a vital component of the care paradigm, potentially reshaping how we approach recovery in ALS. Through expert insights from leading clinicians at institutions like WashU, this article explores key questions around diagnostics, functional assessments, and whether therapies like Tofersen could revolutionize ALS treatment—not just for SOD1 but potentially for broader ALS populations as well. FEATURED QUESTIONS:  Are neurofilament levels routinely measured by neurologists in ALS clinics in the U.S., and should neurofilament testing be considered a standard part of ALS patient evaluation?  It’s not a standard of care at the moment. And, here in the neuromuscular lab under Dr. Robert Bucelli, we have been measuring serum neurofilament since 2021, and most of the attendings here have adopted it as a relatively good biomarker to use when patients come in for evaluation of ALS. There are some caveats, as it may not be elevated in all patients. And, so, it’s not a single test to be able to confirm ALS diagnosis. It needs to be taken in the context of the clinical exam, the clinical history of progression of weakness, excluding other diagnoses that can mimic ALS. I strongly advocate for testing for all my patients in the initial stages, as well during long-term follow-up as well.  Has there been any instance of a person with genetic forms of ALS, such as SOD1 or FUS mutations, who lost the ability to speak and then regained speech following successful treatment?  Not that I am aware of. None of our patients have significant speech changes. Some of the research studies conducted by EverythingALS highlight speech changes and I think some of the recent trials are including software or applications to do that. We haven’t heard of any patient living with ALS with an SOD1 gene receiving Tofersen with chewing or swallowing issues. Some with respiratory issues include the need  to be on non-invasive ventilation. This might not be a fair comparison, considering representation of the whole ALS population, but following the data, there are definite possibilities to improve functioning in patients living with ALS undergoing disease stabilization therapy.  What do you make of the recent data published from various Italian EAPs? While I am not familiar with this publication, there are several studies cited in our research papers that showed similar results of Tofersen in the clinical setting or real-world setting, which depicts significant reduction in the neurofilament levels, maintenance of function, with some patients potentially having continued progression at a slower rate, and some patients showing improvement. Nearly 20-25% of the patients show some degree of improvement. It is to be noted that all of our patients living with ALS have elevated inflammatory attributes (factors) in the spinal fluid. There is no clinical correlation for this, and there are no patients who have experienced severe side effects due to Tofersen. These include increased intracranial pressure, increase in the spinal fluid, radiculitis, or inflammation of the nerves or spinal cord.  When standardized (e.g., converted to Z-scores), do functional outcome measures like the ALSFRS-R and FIM show consistent effect sizes post-Tofersen treatment?  Yes. The sample size of participants was very small, estimated to be around 7. We lacked longitudinal data for one of the participants to report on. The studies were oriented to descriptive statistics over inferential statistics, implying that we are trying to present the data collected over making comparisons. So, FIM, as in functional independence motor score, has been leveraged in several ALS research studies. There is a correlation between FIM motor score and a decline in the ALSFRS overtime with disease progression. It has not been used to monitor for functional improvement in patients living with ALS undergoing disease stabilizing therapies. We are the first paper to present the possibility of using this as a measure in comparison to ALSFRS, and it seems to be more sensitive to patient improvement and functional independence than ALSFRS. The focus as a team is to conduct a larger study with funding.  I have SOD1 but no one in my family has ALS disease. It is interesting that 6 out of 7 in the study similarly had no family member with ALS. Can you explain why, since I was told by the genetic counselor that the mutation is dominant?  Yes, it is interesting that 6 out of 7 had no clear family history of ALS. The majority of the mutations in SOD1 are dominantly inherited. At some point, without a family history, it’s possible for an individual to be the first to develop the mutation. So, there is not much clarity as to why an individual would develop that specific mutation in SOD1. However, we are going to continue to learn more about genetics. The study we conducted highlights the potential of differential response, based on the type of genetic mutation. This highlights a need within ALS research to better identify which patients may or may not benefit from Tofersen, or may not need additional treatment options to fully stabilize their disease.  Given increased cardiovascular risk in ALS disease, how does your program take these risks into account, specifically the maximum heart rate to determine the exercise targets.  Typically, our programs start relatively conservatively and we use low-to-moderate intensity. Presently, the neuromuscular literature indicates between 50 – 70% of the heart rate reserve. Heart rate reserve is a calculation which is based on the individual’s resting heart rate and age, which generates an individualized baseline. We will start by using 50-70% of that maximum and also use the rate of perceived exertion. For individuals with higher respiratory involvement, we have a breathlessness scale for self-monitoring. Furthermore, there are continuous heart rate and oxygen monitors when capacity is measured. During the 10m walk and the 30 seconds sit-to-stand test, we are also monitoring physiologic response and administering a dose based on the tolerance levels, but in general, we have been starting folks conservatively in the 50-70% range. However,individuals have also progressed to the moderate-vigorous range (70-85%). Generally, we use the cardio or heart rate response as a gauge of neuroplasticity and neuromuscular control.  In the context of ALS clinical assessments which you shared, when performing the 10-Meter Walk Test (10mWT), is the test typically conducted with the participant wearing their orthotic devices, or without them?  Yeah, we have done a measure for both. It depends on the individual, and we try to make it a day-to-day activity in their real life. For the patients living with ALS wearing their orthotic devices, I highly encourage them and mention the same in prescriptions for improved safety and control. All the measures are a great gauge, but they are typically capacity measures. It helps us get a baseline, get a measure, help prescribe the activity, discuss safety recommendations such as orthotics, wear, and use. But, one area that can be specifically improved is getting performance measures and tracking activity outside of therapy to understand how the rehab is influencing those individuals outside of the measures we are seeing right in front of us.  What are the broader implications for other forms of ALS outside of SOD1? What is the perspective concerning drug development care paradigms as well as rehabilitation programs?  It’s kind of limited right now. There’s a minimal amount of information on how to do neuron muscle rehab for a patient with ALS whose disease has stabilized. The goal is for multiple drugs or treatments to be made available to help any patient with any form of ALS to reach disease stabilization. At that point, the question is how can we get the function back? I think it’s going to take a lot more than only treatment for patients to have recovery and live with ALS. And, so, we are building the foundational knowledge of what that would look like. It’s a pretty decent step in the right direction that patients on a disease stabilizing treatment like Tofersen right now can participate in neuromuscular rehab for extended periods of time and do it safely. We can progress them, whether that is through resistance exercise with different weights, or increasing their walking program using technology available to help mobility. There is a definite need for extensive research on this subject and hopefully when substantial treatment is available, we can implement the knowledge for patients living with ALS rather than waiting.  When we look at the biggest body of evidence right now within neuromuscular rehab, it’s typically within stroke rehab. We are observing that, with the right dosage of therapy, when patients are in a medically stable position, high intensity rehab can be greatly effective in improving motor function, even years after the initial stroke. This model gives us hope that we can change the current model from low-to-moderate, shifting focus from maintenance in ALS disease management to neuroplasticity and improvement of function.  During the sit-to-stand test in your protocols, is the use of arms to assist in pushing oneself up from the chair allowed or expected?  The standardized assessment is without upper arm assistance. However, there are some patients living with ALS who are unable to perform that, so we allow them to use arm assistance because that is expected as a means to get out of the chair for long-term, based on their current status.  Are the patients in your study just those who go to WashU’s clinic or do you get data from other hospitals (eg. Mass General Hospital)?  Presently, it is an internal study of patients only at WashU who recurrently follow-up in our clinic and are receiving the Tofersen dosing here. It’s unfunded right now. The ALS center and a bunch of other individuals who are highly devoted to seeing patients improve are actively working on the study. Our work with the patients is very goal-oriented and is focused on their routine activities, and we would like to expand this approach. We have submitted some grants to that end and we are still waiting for funding opportunities in the near future.  What was the time between first and second measurements of function?  With reference to the FIM score, we have been keeping all the functional measures for those we have been taking out on a monthly basis. The other ones shown in the slides with the graph consisted of the most recent Tofersen dose, and varied for all the patients over time. For instance, one patient living with ALS was on Tofersen for over 7 months and his FIM score improved from 86 to 89. Another patient living with ALS was on Tofersen for 30 months and had improvement from 86 to 89. So, we are seeing it in the short-term as well as analyzing the functional gains that are retained for a significant period of time.  I'm pre-symptomatic SOD1 L145F variant, which excluded my participation in ATLAS. Back when ATLAS was rolling out recruitment, I spoke to Dr. Bucelli and he mentioned that WashU was "looking at possibly doing a mirror study" of ATLAS. Are you aware of any recent new discussions of such a study? Yes. For the unversed, ATLAS is a study in presymptomatic individuals with SOD1 mutations. They have limited the ALS research study for certain variant mutations, that’s what the question was addressed to. When there’s a change in the neurofilament level, when it increases or if an individual becomes asymptomatic with weakness, it’s potentially starting very early Tofersen treatment in the hopes of delaying the onset of ALS disease or even preventing the onset. So, that ALS research study is still ongoing, and we are not yet able to share data publicly. Hopefully, the study will have promising results and there’s potential looking at the broader implications that – the sooner we confirm ALS diagnosis, especially the genetic form or hereditary, ALS treatment can be initiated promptly. During the time when symptoms of ALS start showing up, there could be a possibility that we can prevent the onset of ALS disease, which could be amazing.  I am not aware of any kind of mirror study, but I will definitely pass that along to Dr. Bucelli and let him know about the question.  Why can’t non gene mutation patients be offered the rehabilitation program at their own discretion?  [I wasn’t offered any PT during the first 3 years of a clinic setting but pursued a clinic setting that agreed to let me try! Can this not be a patient/clinic discussion and decision, not a blanket statement? Every good day is a joy, let us have our days]  We actually recommend rehab programs for all of our ALS patients we see. The difference in ALS treatment here is the dosage and how those programs are tailored. There is good evidence for low-to-moderate intensity exercise, but we really recommend working with individuals or therapists familiar with ALS disease progression, because it can be a tough balance to titrate those programs appropriately. There is a risk for muscle overuse and further muscle decline. The biggest thing is, when you are strengthening muscle, it can break down those muscle fibers. In healthy individuals, they typically grow stronger. For patients with ALS that are not on disease stabilizing medications, that poses a risk that we want to monitor. Exercise can still be appropriate, as long as it's dosed well and individualized to that person. Here at WashU, we do work with all of our patients living with ALS, it’s just the difference in the dosage. Basically, making sure the program that is prescribed for the patients is monitored and changed over time. We have individuals that come in monthly, 3 months, 6 months, or other frequencies to ensure that the program that they have been given is tailored to their needs. Ultimately, the ALS treatment approach is goal-oriented, and it’s personalized to what they want to be able to do, with the goal of enhancing their quality of life.  Do you have exercise programs for patients with ALS at different stages and fitness levels? What are recommendations for patients who don’t have access to your clinic? Yeah, a really good resource, free for clinicians and patients is the Academy of Neurologic Physical Therapy. It’s all neurologic-specialized physical therapists, and so there is literature and evidence-based practices for guidelines on low-to-moderate exercise. I still highly recommend working with a therapist who specializes in ALS so that they can test and measure patients with ALS for their functional capacity. There’s also another website called ‘Choose PT’ where you can search for a physical therapist  who specializes in ALS in your area Do you see Toferson being used prophylactically? The ALS research study conducted by ATLAS is hoping to answer whether it is possible to treat someone who has not yet developed the symptoms of ALS but has increased levels of neurofilament, and if so, to understand the potential clinical benefits. After the completion of the study, it will give us a lot more information on how to best use Tofersen in treatment of SOD1 ALS. There’s also some interesting research in sporadic ALS that SOD1 protein misfolds and contributes to the pathology of ALS. It would be interesting to study the use of Tofersen in non-SOD1 ALS patients and look for any prevalent benefits.  CONCLUSION: The growing clinical research studies around Tofersen and neuromuscular rehabilitation is signaling a critical shift in ALS treatment options. From proactive biomarker testing like neurofilament levels to individualized exercise protocols, care is becoming more patient-centered and precision-driven. While genetic therapies like Tofersen are currently specific to SOD1 ALS, the insights gained are paving the way for broader applications. The future of ALS treatment may lie in early detection, personalized rehab, and a multidisciplinary approach that combines medical and functional care. With continued research and collaborative innovation, there’s real hope for improved quality of life and recovery potential in patients living with ALS.

Amyotrophic Lateral Sclerosis (ALS), also commonly known as Lou Gehrig’s disease, is a gradual neurodegenerative disease which causes the nerve cells in the brain to deteriorate. Initially impacting the arms and legs or having changes in speech, ALS disease causes extreme muscle distress and severely affects mobility, speech, swallowing, breathing, and muscle control, leading to progressive physical disability. Let’s take a closer look at the process of ALS diagnosis, highlighting the tests, symptoms, and key procedures.  What Is ALS and Why Is Diagnosis Important? ALS is a brutal neurodegenerative disease that gradually strips away the ability to eat, speak, move, and breathe, casting a dark shadow with its fatal prognosis. Overview of Amyotrophic Lateral Sclerosis (ALS): ALS disease can have a debilitating impact on physical health by damaging the motor neurons in the brain and spinal cord, which manage voluntary movements and muscle control (balancing relaxation and contraction). ALS causes progressive deterioration and death of these motor neurons, thereby causing the brain to cease the initiation and controlling of muscle movement. This impacts the ability of the person living with ALS (pALS) to chew, swallow, speak, and breathe. ALS symptoms appear gradually, and manifestation of symptoms can vary from person to person. Initially, ALS often begins with muscle twitching, which could appear as difficulty grabbing a pencil, lifting a water bottle, or changes in speech. This leads to progressive weakness in limbs, trouble swallowing, and difficulty in speech. The average life expectancy for people living with ALS is typically between 2 – 5 years after diagnosis, but some may live for  5 – 10 years or longer, depending on the progression of the disease.  The Importance of Early and Accurate ALS Diagnosis In many cases, people living with ALS are diagnosed after the disease has progressed to advanced stages. This often means they experience functional impairment and may miss the opportunity to benefit from treatment that could potentially improve their life expectancy of ALS. Although there are no specific diagnostic tests, ALS diagnosis typically follows a certain process, based on clinical symptoms and comprehensive evaluation to enable early intervention.  According to studies in the U.S., the duration from the first ALS symptom to a confirmed ALS diagnosis takes about 11 - 15 months. This timeline includes a process of elimination, with a minimum of 3 - 4 consultations with different healthcare professionals, which may include orthopedic surgeons, spinal specialists, chiropractors, and neurologists, which eventually lead to an ALS specialist. With timely ALS diagnosis, there is a higher quantity of healthy motor neurons in the spinal cord and brain, providing a window of time to modify ALS disease progression with experimental drugs and other novel treatment options. With early ALS diagnosis, people living with ALS tend to maintain better motor function, while the underlying cause of the disease is investigated. Early intervention also supports caregivers and families by easing some financial and emotional burden.  Common Symptoms Leading to ALS Diagnosis Although ALS diagnosis can take significant time, documenting and evaluating the early symptoms can accelerate the treatment process.  Signs and Symptoms of ALS Generally, ALS symptoms may differ among individual cases, based on the nerve cells impacted. It often begins with muscle weakness which progressively worsens, leading to a complete loss of mobility as the disease progresses through its stages. Some of the early signs and symptoms of ALS are as follows: Difficulty walking or doing routine activities. Stumbling and falling during movement. Experiencing weakness in the feet, legs or ankles. Weakness in the arms or hands, causing clumsiness. Difficulty swallowing and slurred speech.  Changes in thinking and behavioral patterns. Lack of control while laughing, yawning, or crying.  Muscle cramps and muscle twitching, especially in the arms, shoulders, feet, and tongue.  Early symptoms of ALS can sometimes be isolated to the feet, legs, hands, or arms. As the different stages of ALS progress, it starts affecting other organs in the body. ALS continues to worsen, eventually leading to an inability to do basic activities such as chewing, breathing, and speaking. The disease is so brutal that the person living with ALS can be paralyzed at advanced stages.  ALS symptoms leading to ALS diagnosis (PC: ALS News Today) When to Seek Medical Evaluation for ALS Symptoms If you are experiencing consistent muscle weakness, cramps, unusual exhaustion, or frequent dropping of objects during physical activity, it is important to seek medical evaluation. Prompt evaluation is critical to early ALS diagnosis, which may allow pALS to benefit from treatment, to ensure timely interventions for ALS treatment with required drugs or medication and other forms of therapy. The gradual progression of ALS disease may aggravate conditions with worsening symptoms, causing progressive muscle atrophy, extreme muscle distress, and weakness. If you, or someone you know, is experiencing muscle weakness, difficulty with everyday tasks, or changes in speech or ability to eat,  please seek medical evaluation.  Next steps after ALS diagnosis (PC: ALS News Today) Tests for ALS Diagnosis ALS diagnosis can be a difficult process, as early symptoms can resemble other neurodegenerative diseases. The following tests may be given as part of a comprehensive medical evaluation for early ALS diagnosis are: Electromyography  This test involves inserting a thin needle through the skin into specific muscles. Electromyography predicts ALS diagnosis by documenting the movement of muscles during contraction and relaxation. The records can help determine if the person has any nerve or muscle damage, as well as the specific location and intensity.  Nerve conduction study Nerve conduction study evaluates the ability of the nerves to issue signals to the muscles, helping to determine nerve conditions within different organs. ALS diagnosis can be confirmed with prevalent nerve damage. Generally, both electromyography and nerve conduction study are conducted together with samples from limb,  bulbar, and thoracic locations.  MRI Magnetic Resonance Imaging (MRI) scans offer intricately detailed and structured images of the spinal cord and the brain. With advanced MRI techniques, such as diffusion tensor imaging (DTI), it is possible to analyze very miniscule changes, such as white matter integrity, particularly in the corticospinal tract. This test may detect ALS diagnosis even before the other clinical signs. The MRI can detect tumors in the spinal cord, presence of herniated disks in the neck, and other changes in the body which indicate ALS symptoms or other neurodegenerative diseases. Blood and urine testing With a series of blood and urine tests, it is possible to rule out other conditions which share common ALS symptoms. ALS diagnosis can be detected through blood tests which show high levels of neurofilament light (NfL). The rise in NfL levels implies rapid degeneration of the neurons, making it a valuable biomarker for diagnosis of ALS disease. Spinal tap The spinal tap, or lumbar punction test involves extracting spinal fluid for laboratory testing. During the test, a small needle is inserted between two bones situated in the lower back, and spinal fluid is collected through the needle. Usually, the cerebrospinal fluid (CSF) of people living with ALS does not contain specific abnormalities that confirm ALS diagnosis. The CSF usually appears normal or has minimal changes, so lumbar puncture or spinal tap cannot directly confirm ALS disease, but examining CSF can indicate other conditions or diseases which are similar to the ALS disease. Test results can vary, sometimes showing a rise in protein concentration or an increase in albumin or IgG levels, which suggests a potential blood-brain barrier damage in ALS disease.  Nerve and muscle biopsy Nerve and muscle biopsies are not recommended for preliminary ALS diagnosis, but can help in the process of eliminating other conditions. During the procedure, small pieces of nerve/muscle tissue are collected for further laboratory analysis. These tests are generally ordered when clinicians suspect a muscle or nerve disorder, particularly with unusual weakness, pain or high levels of creatine kinase (CK).  Genetic testing Genetic testing plays a crucial role in ALS diagnosis, as it can identify mutations linked to familial ALS. The test involves collecting a blood sample and analyzing it using techniques, such as next-generation sequencing, which allows for the  simultaneous analysis of multiple genes related to ALS. The key genes tested for ALS diagnosis include C9orf72, SOD1, FUS, and TARDBP, and some other genes may be examined, according to clinical assessment, family history and ethnicity.  Conclusion  ALS is a brutal neurodegenerative disease which impacts voluntary movement and muscle mobility of the person, with gradual onset varying according to the intensity of the deteriorating neurons. The progression of the ALS disease can vary across individuals, and symptoms of ALS may manifest differently according to the different stages of ALS. ALS diagnosis is a complex process, which often involves a combination of different tests, from clinical evaluation, neurological tests, and other lab assessments. Early and accurate diagnosis is essential for timely intervention, effective management, and improved quality of life for people with ALS. Digital biomarkers studied by EverythingALS aim to simplify the diagnostic process, potentially enabling earlier intervention and improved outcomes.

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

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

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. Fireside Cha t JOIN US J oin us for an opportunity to be with caring people who w ish to chat, listen, share, and learn. Giving Thanks with EverythingALS When Nov 26, 2025, 7:00 PM EST Where Virtual Event Details Our Hosts McFinn Lovere ALS Advocate & Pathfinder McFinn Lovere was diagnosed with ALS in 2006 at the UCSF, he was only able to move his head and two fingers. His spirituality and team of caretakers gave him HOPE and he is documented as the 42nd "ALS Reversal" by Dr.Bedlack. At EverythingALS, he aims to bring meaning, hope, and an uplifting atmosphere to a community that he knows very intimately and one that needs it most. His email address is mcfinn@everythingals.org Kathleen McCallum Pathfinder Kathleen McCallum, and for the past two years, I have been helping my friend Willard, who was diagnosed with ALS in 2022. There is hope, and if I can help provide it for you, please contact me at kathleen@everythingals.org Faith Oremland Pathfinder Faith Oremland's son was diagnosed with ALS in January 2022. If you are dealing with the challenges of being a parent to a child with ALS, issues with family communications, and learning how to live positively in the face of ALS, please get in touch with me at faith@everythingals.org Joe Redmond Pathfinder Joe Redmond was diagnosed with ALS in 2012. If I can make your journey any easier, or if you have any questions, let me help you find answers. My hope is to be the resource you need. Reach out to me at joe@everythingals.org Monica Martinez Pathfinder Monica Martinez was diagnosed with ALS in 2023. Welcome to Pathfinders! We are here to support, guide, and walk with you on this journey. You are not alone! WE GOT THIS! TOGETHER WE ARE BETTER THAN ALS! Reach out to me at monica@everythingals.org Doug Hill Pathfinder Doug Hill was diagnosed with bulbar onset ALS in January of 2024. ALS doesn’t define me; it has redefined me. In fact, it makes me stronger, as a Pathfinder, I am an active participant and advocate in the ALS community, and I would love to connect with you to share what I’ve found and how it has helped me in this journey. Reach out to me at doug@everythingals.org Cathy Cummins Pathfinder Cathy Cummins was diagnosed with ALS in 2008. Chiropractor, professor, and former elite athlete, now living with ALS and dedicated to guiding others through resilience and adaptation. As a Pathfinder, I share insights from my healing journey to inspire strength and community. Reach out to me at cathy@everythingals.org Willard Blackwell Pathfinder Willard Blackwell was diagnosed with ALS in May of 2022. A professional singer and musician leading the Gator Nation Band. Please get in touch with me at willard@everythingals.org John Hudacek Pathfinder John Hudacek was diagnosed with ALS in November 2021. He is a slow progressor. Now is the time to discover the hidden strength in each of us. I am honored to hold your hand on this journey, reach me at john@everythingals.org Michael Montemayor Pathfinder Mike Montemayor was diagnosed with ALS in Julyof 2003. I hope to be able to help others with ALS as well. God Bless!! mike@everythingals.org Shawn Penno Pathfinder Shawn Penno was diagnosed with ALS in September 2023. He has been a care aide for 25 years, 2 in long-term care and the rest in the Community. Please reach out if you need someone to 'vent' to, help with problems, or someone to talk to alleviate the isolation shawn@everythingals.org Siddu Tummala Pathfinder Siddu (Sridhar) Tummala is the CEO of Cresido Analytics. Reach out to me at siddu@everythingals.org Anthony (Tony) Martin Varela Pathfinder Anthony (Tony) Martin Varela was diagnosed with ALS in April of 2023. I keep a positive outlook as much as I can, but staying busy seems to keep my mind off of it and works the best. I am looking forward to helping in any way I can. Reach out to me at tony@everythingals.org Ivonne Vaughn Pathfinder Ivonne Vaughn was diagnosed with ALS in January of 2025. My goal is to help and encourage those with ALS (pALS), those caring for ALS loved ones (cALS) and to share the HOPE I have in my ALS journey. We all need good listeners in our lives. As a Pathfinder, I am here to listen, support, and encourage you. Reach out to me at ivonne@everythingals.org .