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    ALS explained: symptoms, diagnosis, treatment and research in 2026

    ALS is a progressive disease that kills the motor neurons controlling voluntary movement and breathing. Most people die within three to five years of their first symptoms, though about 1 in 10 live 10 years or more.[1][2] No treatment stops or reverses it. Approved drugs offer modest benefits, and in September 2026 a gene-targeted drug for a rare inherited form met its main goal in a phase 3 trial.[3][4][5]

    Editor reviewedStrict sourcingUpdated ExplainerHealth and medicine, Neuroscience and brain-computer interfaces, Life sciences

    Amyotrophic lateral sclerosis (ALS) gradually takes away the ability to move, speak, swallow and breathe.[1][6] It drew public attention in October 2026 after the death of Brooke Eby, an ALS patient-advocate known for documenting her life with the disease online.[7] Scientific news came the same autumn, when a gene-targeted drug for a rare form of ALS met its main trial goal.[5] This explainer is the first stop in a short course. This page is not medical advice. If you have symptoms or questions about ALS, talk to a doctor or neurologist.

    What ALS does

    Your brain and spinal cord send instructions to your muscles through nerve cells called motor neurons. In ALS these cells die. Muscles stop getting messages, so they weaken, twitch and shrink.[1][6] Over time, walking, talking, chewing and breathing become impossible without help.[6] Most people keep their ability to think and remember, so they are fully aware of what is happening. That can cause anxiety and depression for them and their families.[8]

    ALS involves degeneration of motor neurons in the brain and spinal cord. Denervated muscles weaken, show fasciculations and atrophy.[6] In the UK the umbrella term is motor neurone disease (MND), of which ALS is the most common type.[9] Most deaths result from respiratory failure, usually within three to five years of symptom onset, while about 10% of people survive a decade or more.[2] NINDS notes that cell and animal research points to defects in protein recycling, gene regulation and motor neuron structure, with growing evidence for a role of glia and inflammation.[10]

    Who gets it

    Symptoms most often begin between ages 55 and 75, and men are slightly more likely to be affected.[11] Some studies suggest military veterans face 1.5 to 2 times the risk, for unclear reasons.[12] Citing CDC, the FDA put the number of Americans living with ALS at 16,000 to 32,000 in 2023.[13]

    For most people ALS appears without any family history.[14] About 1 in 10 cases run in families.[14]

    Nearly all cases are sporadic. About 10% are familial, caused by mutations in more than a dozen genes.[14] C9orf72 accounts for 25-40% of familial cases and SOD1 for 12-20%.[15] FUS mutations cause an estimated 0.6% of all ALS, but 43-52% of juvenile and pediatric cases.[16] Genetic subtype now matters for treatment, because the two gene-targeted antisense drugs each address a single gene.[17][5]

    Diagnosis

    No single test can confirm ALS.[18] Doctors take a full history and repeat neurological exams over time. They use electromyography (EMG), nerve conduction studies, MRI and sometimes a lumbar puncture to rule out other conditions.[18] Early symptoms such as twitches and weakness can resemble less serious problems, so diagnosis can be hard at first. NINDS recommends seeing a neurologist familiar with ALS early, because treatments may work best soon after symptoms start.[9][19]

    Treatment and care

    No treatment stops or reverses ALS.[3] NINDS counts one symptom-managing and four disease-modifying therapies approved by the FDA, and calls the disease-modifying effects modest.[4] Riluzole may extend survival by a few months. Edaravone slowed functional decline in some patients. Tofersen is for the roughly 2% of people whose ALS is linked to SOD1.[20][21][13] Our ALS treatments guide compares the evidence for each.

    Day-to-day care comes from multidisciplinary teams, including physical, occupational and speech therapists.[22] Communication aids include eye-tracking speech synthesizers and voice banking.[23] Ventilation masks and feeding tubes support breathing and nutrition as the disease advances.[24] Brain-computer interfaces are being researched. One 2024 study let a man with ALS converse with 97.5% accuracy over 8.4 months; see speech-neuroprostheses.[25][26]

    Research in 2026

    On 22 September 2026, Otsuka and Ionis reported that ulefnersen, an antisense drug for FUS-ALS, met its primary endpoint in the phase 3 FUSION trial. As of October 2026 it is not approved anywhere.[5][27] A confirmatory trial of tofersen in people who carry SOD1 mutations but have no symptoms yet is due to finish its primary phase in 2027.[28] The ALS research tracker keeps a dated timeline.

    Next in this course

    Read the ALS reference page, then the treatments guide. For how antisense drugs work, see how RNA silencing drugs work. Then read about speech-neuroprostheses, which have let a man with ALS converse again,[26] and the advocacy of Brooke Eby, and follow the research tracker.

    Health & medicine

    Amyotrophic lateral sclerosis (ALS)

    Reference page on ALS (Lou Gehrig's disease, a form of motor neurone disease): key facts, genetics, approved drugs, survival and current trials.

    More in Health & medicine

    Developing in Health

    Questions readers ask

    What is ALS?

    Amyotrophic lateral sclerosis, formerly known as Lou Gehrig's disease, is a progressive neurological disorder that affects motor neurons, the nerve cells in the brain and spinal cord that control voluntary movement and breathing.[1]

    How long do people live with ALS?

    Most people with ALS die of respiratory failure, usually within three to five years of symptoms first appearing, but about 1 in 10 survive 10 years or more.[2]

    Is ALS inherited?

    Usually not. Nearly all cases are sporadic. About 10% are familial, most often linked to the C9orf72 or SOD1 genes.[14][15]

    How is ALS diagnosed?

    There is no single test. Doctors rely on history and repeated neurological exams, with EMG, nerve conduction studies, MRI and sometimes a lumbar puncture to rule out other conditions.[18]

    Is there a cure for ALS?

    No. FDA-approved drugs may prolong survival, slow decline or manage symptoms, but none stops or reverses the disease.[3]

    Does ALS affect thinking?

    People with ALS usually remain able to reason, remember and understand, so they are aware of their loss of function, which can cause anxiety and depression.[8]

    Sources

    · 28 claims from 12 publishers

    Each numbered claim is a statement we checked against the sources listed with it. Tap a number in the text to see its sources in place.

    1. [1]

      Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig's disease, is a progressive neurological disorder affecting motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. confirmedas of 2026-10-11

    2. [2]

      Most people with ALS die of respiratory failure, usually within three to five years of symptoms first appearing, but about 1 in 10 survive 10 years or more. confirmedas of 2026-10-11

    3. [3]

      There is no treatment that stops or reverses ALS; approved drugs may prolong survival, slow decline or manage symptoms. confirmedas of 2026-10-11

    4. [4]

      NINDS says the FDA has approved one symptom-managing and four disease-modifying ALS therapies, but the impact of the disease-modifying therapies is modest. confirmedas of 2026-10-11

    5. [5]

      On 22 September 2026 Otsuka and Ionis announced that the phase 3 FUSION trial of ulefnersen in FUS-ALS met its primary endpoint, a joint-rank measure of function and survival through day 505 (p=0.0005 versus placebo). confirmedas of 2026-09-22

    6. [6]

      As motor neurons die they stop sending messages to muscles, which weaken, twitch (fasciculations) and waste away; over time people lose the ability to start and control walking, talking, chewing and breathing. confirmedas of 2026-10-11

    7. [7]

      ALS patient-advocate Brooke Eby died aged 37; the ALS Network announced her death on 1 October 2026. confirmedas of 2026-10-02

    8. [8]

      People with ALS usually remain able to reason, remember and understand, so they are aware of their loss of function, which can cause anxiety and depression for them and their families. confirmedas of 2026-10-11

    9. [9]

      In UK usage ALS is the most common type of motor neurone disease (MND); early MND symptoms such as twitches and weakness can resemble less serious conditions. confirmedas of 2026-10-11

    10. [10]

      NINDS says cell and animal research suggests motor neuron death in ALS stems from several cellular defects, including in protein recycling, gene regulation and neuron structure, with growing evidence that glial and inflammatory cells also play a role. confirmedas of 2026-10-11

    11. [11]

      ALS can occur at any age but symptoms most commonly develop between 55 and 75; men are slightly more likely than women to develop it. confirmedas of 2026-10-11

    12. [12]

      Some studies suggest US military veterans are about 1.5 to 2 times more likely to develop ALS, for reasons that are unclear. confirmedas of 2026-10-11

    13. [13]

      Citing CDC, the FDA said in 2023 that between 16,000 and 32,000 Americans are living with ALS, and that about 2% of cases (fewer than 500 US patients) are associated with SOD1 mutations. confirmedas of 2023-04-25

    14. [14]

      Nearly all ALS cases are sporadic, with no clear risk factors or family history; about 10% are familial, caused by mutations in more than a dozen genes. confirmedas of 2026-10-11

    15. [15]

      Mutations in C9orf72 cause about 25% to 40% of familial ALS cases, and mutations in SOD1 another 12% to 20%. confirmedas of 2026-10-11

    16. [16]

      FUS-ALS, caused by mutations in the fused in sarcoma (FUS) gene, accounts for an estimated 0.6% of ALS cases overall but 43-52% of juvenile and pediatric cases, and early-onset cases can be fatal within 1-2 years of symptom onset. confirmedas of 2026-09-22

    17. [17]

      Tofersen is an antisense oligonucleotide that targets SOD1 messenger RNA to reduce production of SOD1 protein, and it is given by spinal (intrathecal) injection. confirmedas of 2023-04-25

    18. [18]

      There is no single test that can definitely diagnose ALS; doctors use history, repeated neurological exams, and tests such as electromyography, nerve conduction studies, MRI and sometimes a lumbar puncture to rule out other disorders. confirmedas of 2026-10-11

    19. [19]

      NINDS advises getting an accurate diagnosis as soon as possible because ALS treatments may be most effective soon after symptoms start, while the NHS notes MND can be difficult to diagnose in its early stages. confirmedas of 2026-10-11

    20. [20]

      Riluzole (Rilutek) is an oral drug thought to reduce motor neuron damage by lowering glutamate; trials showed it may extend survival by a few months, and liquid and dissolving forms exist for people with swallowing problems. confirmedas of 2026-10-11

    21. [21]

      Edaravone (Radicava) is an antioxidant given intravenously or orally that has been shown to slow functional decline in some people with ALS; Radicava ORS can be taken by mouth or through a feeding tube. confirmedas of 2026-10-11

    22. [22]

      Care for ALS is best provided by multidisciplinary teams, including physical, occupational and speech therapy; the NHS says people with MND should see their care team every 2 or 3 months. confirmedas of 2026-10-11

    23. [23]

      Speech therapists help people with ALS keep communicating, including eye-tracking speech synthesizers and voice banking, which stores a person's own voice for later use. confirmedas of 2026-10-11

    24. [24]

      As breathing muscles weaken, noninvasive ventilation through a mask may help, first at night and later full time, and a feeding tube can reduce the risk of choking and pneumonia when eating becomes difficult. confirmedas of 2026-10-11

    25. [25]

      NINDS describes brain-computer interfaces, which let people communicate or control equipment using only brain activity, as an area of research for people with severe paralysis. confirmedas of 2026-10-11

    26. [26]

      The UC Davis neuroprosthesis reached 99.6 percent accuracy on a 50-word vocabulary on its first day of use and sustained 97.5 percent accuracy over 8.4 months, with the participant conversing at about 32 words per minute for more than 248 hours. confirmedas of 2024-08-15

    27. [27]

      As of October 2026 ulefnersen is not approved anywhere; Otsuka and Ionis plan to discuss expedited submission with the FDA and to present detailed results at a medical congress and in a peer-reviewed journal. confirmedas of 2026-09-22

    28. [28]

      The ATLAS confirmatory trial is testing tofersen in 158 presymptomatic adult SOD1 mutation carriers with elevated neurofilament; as of October 2026 it is active but not recruiting, with primary completion estimated for August 2027. confirmedas of 2026-10-11

    Revision history (1)
    1. Page created.

    Created Oct 11, 2026. Last reviewed by an editor on Oct 11, 2026. Next scheduled review: Jan 11, 2027.

    Cite this page

    "ALS explained: symptoms, diagnosis, treatment and research in 2026." ContentLora, updated Oct 11, 2026. https://contentlora.com/explain/als-explained

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