concept
Amyotrophic lateral sclerosis (ALS)
Also known as ALS, Lou Gehrig's disease, motor neurone disease, MND
Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig's disease, is a progressive disorder of the motor neurons that control voluntary movement and breathing.[1] It has no cure. People usually die of respiratory failure within three to five years of symptom onset, and FDA-approved drugs have modest effects.[2][3][4]
Key facts
ALS is a neurological disorder in which the motor neurons that control voluntary muscles and breathing degenerate and die.[1] It is the most common type of motor neurone disease.[5] For a plain-language introduction, start with ALS explained. This page is a reference summary and is not medical advice. Talk to a clinician about diagnosis or treatment.
Course of the disease
As motor neurons die, muscles weaken, twitch and waste away. People gradually lose the ability to walk, talk, chew and breathe on their own.[6] Most people keep their ability to reason and remember, so they stay aware of the decline.[7] Death usually comes from respiratory failure within three to five years of the first symptoms, though about 1 in 10 people survive 10 years or longer.[3]
Causes and genetics
Nearly all cases are sporadic, with no clear risk factor or family history.[8] About 10% are familial.[8] C9orf72 mutations account for 25-40% of familial cases and SOD1 mutations for 12-20%.[9] FUS mutations cause an estimated 0.6% of all ALS but 43-52% of juvenile and pediatric cases.[10] Research points to several cellular defects, including in protein recycling and gene regulation, and to a role for glial and inflammatory cells.[11]
Diagnosis and care
No single test can diagnose ALS. Diagnosis rests on history, repeated neurological exams, and tests such as EMG and MRI that rule out other conditions.[12] Care comes from multidisciplinary teams. As the disease progresses it adds breathing support, feeding tubes and communication aids such as voice banking.[13][14][15] Implanted speech-neuroprostheses are an experimental option. In one 2024 study, a man with ALS received 256 cortical electrodes.[16]
Treatments
| Drug | Who it is for | Evidence in brief |
|---|---|---|
| Riluzole | Adults with ALS | May extend survival by a few months[17] |
| Edaravone | Adults with ALS | Slowed functional decline in some patients[18] |
| Tofersen (Qalsody) | SOD1-ALS only | Accelerated approval on a biomarker[19] |
| Relyvrio | Withdrawn 2024 | Larger trial failed to confirm benefit[20] |
The ALS treatments guide covers each drug’s trial evidence.
Research
In September 2026, ulefnersen, an antisense drug for FUS-ALS, met its primary endpoint in the phase 3 FUSION trial, according to its developers. It was not approved as of October 2026.[21][22] The ATLAS trial is testing whether tofersen helps SOD1 carriers who have no symptoms yet.[23] The patient-advocate Brooke Eby founded ALStogether, an online peer community for people with ALS and their caregivers.[24] Dated milestones are in the ALS research tracker.
Read next
Next in the crash course
ALS treatments guide: riluzole, edaravone, tofersen and what's next
What the trials and regulators found for each ALS drug: riluzole, edaravone, tofersen for SOD1-ALS, withdrawn Relyvrio, and the 2026 ulefnersen results.
Questions readers ask
Is ALS the same as motor neurone disease?
ALS is the most common type of motor neurone disease (MND), the umbrella term used in the UK.[5]
Which genes cause ALS?
More than a dozen genes can cause familial ALS. C9orf72 accounts for about 25-40% of familial cases and SOD1 for 12-20%; FUS mutations cause an estimated 0.6% of all cases but about half of juvenile cases.[8][9][10]
Sources
· 28 claims from 11 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]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [2]
There is no treatment that stops or reverses ALS; approved drugs may prolong survival, slow decline or manage symptoms. confirmedas of 2026-10-11
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Motor neurone disease · NHS (retrieved 2026-10-11)
- [3]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [5]
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
- Motor neurone disease · NHS (retrieved 2026-10-11)
- Motor neurone disease · NHS (retrieved 2026-10-11)
- [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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [7]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [8]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [9]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [10]
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
- Otsuka Announces Transformative Phase 3 FUSION Results for Ulefnersen · Otsuka Pharmaceutical · 2026-09-22 (retrieved 2026-10-11)
- Ulefnersen Meets Primary End Point in Phase 3 FUSION Trial for FUS-ALS · NeurologyLive · 2026-09-22 (retrieved 2026-10-11)
- [11]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [12]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [13]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Motor neurone disease · NHS (retrieved 2026-10-11)
- [14]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [15]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [16]
In the UC Davis speech neuroprosthesis study, a 45-year-old man with ALS received four microelectrode arrays with 256 electrodes in his left ventral precentral gyrus. confirmedas of 2024-08-15
- An Accurate and Rapidly Calibrating Speech Neuroprosthesis · New England Journal of Medicine · 2024-08-15 (retrieved 2026-10-10)
- New brain-computer interface allows man with ALS to 'speak' again · UC Davis Health · 2024-08-14 (retrieved 2026-10-10)
- [17]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Motor neurone disease · NHS (retrieved 2026-10-11)
- [18]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [19]
The FDA granted accelerated approval to Qalsody (tofersen) for ALS associated with SOD1 mutations in April 2023, based on a reduction in plasma neurofilament light, a blood marker of nerve injury. confirmedas of 2023-04-25
- FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene · U.S. Food and Drug Administration · 2023-04-25 (retrieved 2026-10-11)
- FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene · U.S. Food and Drug Administration · 2023-04-25 (retrieved 2026-10-11)
- FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene · U.S. Food and Drug Administration · 2023-04-25 (retrieved 2026-10-11)
- [20]
The FDA approved sodium phenylbutyrate/taurursodiol (Relyvrio) in September 2022 based on a single smaller trial; a larger trial failed to confirm the results and the manufacturer withdrew it from the market in 2024. confirmedas of 2026-10-11
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [21]
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
- Otsuka Announces Transformative Phase 3 FUSION Results for Ulefnersen · Otsuka Pharmaceutical · 2026-09-22 (retrieved 2026-10-11)
- Ulefnersen Meets Primary End Point in Phase 3 FUSION Trial for FUS-ALS · NeurologyLive · 2026-09-22 (retrieved 2026-10-11)
- [22]
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
- Ulefnersen Meets Primary End Point in Phase 3 FUSION Trial for FUS-ALS · NeurologyLive · 2026-09-22 (retrieved 2026-10-11)
- Otsuka Announces Transformative Phase 3 FUSION Results for Ulefnersen · Otsuka Pharmaceutical · 2026-09-22 (retrieved 2026-10-11)
- [23]
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
- ATLAS: tofersen initiated in clinically presymptomatic adults with a SOD1 mutation (NCT04856982) · ClinicalTrials.gov (U.S. National Library of Medicine) · Status: Active, not recruiting; enrollment 158 (actual); primary completion 2027-08-07 (estimated) (retrieved 2026-10-11)
- FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene · U.S. Food and Drug Administration · 2023-04-25 (retrieved 2026-10-11)
- [24]
Eby founded ALStogether, an online Slack peer community for people with ALS and caregivers, which joined the ALS Network in 2026 and had more than 1,700 members as of March 2026. confirmedas of 2026-10-01
- Brooke Eby Honored with Advocate of the Year Award · ALS Network · 2026-03-26 (retrieved 2026-10-11)
- Remembering Brooke Eby · ALS Network · 2026-10-01 (retrieved 2026-10-11)
- Brooke Eby, Beloved TikTok Star and ALS Activist, Dead at 37 · Rolling Stone · 2026-10-02 (retrieved 2026-10-11)
- [25]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
- [26]
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
- FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene · U.S. Food and Drug Administration · 2023-04-25 (retrieved 2026-10-11)
- [27]
Brooke Eby was diagnosed with ALS in 2022, at age 33. confirmedas of 2026-10-02
- Remembering Brooke Eby · ALS Network · 2026-10-01 (retrieved 2026-10-11)
- Brooke Eby, Who Chronicled Life With ALS With Humor and Honesty, Dies at 37 · TODAY (NBC News) · 2026-10-02 (retrieved 2026-10-11)
- [28]
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
- Amyotrophic Lateral Sclerosis (ALS) · National Institute of Neurological Disorders and Stroke (NIH) (retrieved 2026-10-11)
Revision history (1)
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Created Oct 11, 2026. Last reviewed by an editor on Oct 11, 2026. Next scheduled review: Jan 11, 2027.
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"Amyotrophic lateral sclerosis (ALS)." ContentLora, updated Oct 11, 2026. https://contentlora.com/wiki/amyotrophic-lateral-sclerosis
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