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    ALS

    ALS: Care that adds time now, and research toward a cure.

    About 32,893 Americans are living with ALS. There's no cure yet, but treatments can slow it, ease it and extend life.

    Try it in the sliderTalk to Ryan

    Ryan K. Hertel · heyitskenton

    The problem

    What we're up against.

    • No cure yet.

      ALS usually takes a life within a few years of the first symptoms, though some people live far longer.

    • More families each year.

      About 32,893 people were living with ALS in the US in 2022, a number projected to reach about 36,308 by 2030.

    • A heavy cost that keeps climbing.

      One national study put the cost of ALS at about $63,693 a person a year, counting medical care, home changes, paid caregiving and lost income. Late in the disease, insurers' costs alone reach about $121,903 a year.

    • Families carry the care.

      Even in France, where ALS health costs are covered, 88% of patients relied on family caregivers, most often a spouse.

    What works

    Proven, and ready to grow.

    • Specialist clinics.

      In Ireland, people cared for at a specialist ALS clinic lived a median of 7.5 months longer than those seen in general neurology, and a later comparison found the same advantage.

    • Help breathing.

      In a randomized trial, breathing support through a mask gave people whose swallowing muscles still worked a median of 205 more days, more than today's drugs offer.

    • A first drug for a genetic form.

      Tofersen became the first drug approved for ALS caused by changes in a single gene, behind about 2% of cases, or fewer than 500 Americans.

    • Testing many drugs at once.

      The HEALEY platform trial tested seven drugs in the time a traditional trial might test one or two, at lower cost and with fewer people on placebo.

    • One summer of buckets.

      The Ice Bucket Challenge of 2014 raised $115 million for the ALS Association, and the research it paid for found five new genes linked to ALS.

    What a family could fund

    Where the money goes furthest.

    • Keep the clinics open.

      92% of the ALS clinics surveyed lean on nonprofits and philanthropy, and only 17% reported no deficit.

    • Large trials, and networks that last.

      Experts name funding for large trials across many sites, and for lasting research networks, as a critical gap. The HEALEY trial plans to keep going until there are safe, effective treatments for everyone with ALS.

    • Help at home.

      Beyond medicine, the costs come from moving or adapting a home and paying for caregivers, which a family's initiative can help cover.

    Honest limits

    What money can't promise.

    • Drug trials keep failing.

      More than 50 randomized trials of drugs meant to slow the disease failed to show results, and pridopidine, among the first drugs tested in the HEALEY trial, didn't slow it either.

    • Approved isn't always proven.

      Relyvrio was approved by the FDA, then pulled from the market when its larger trial failed to beat a placebo.

    • Modest gains so far.

      Only three drugs have been approved for ALS since 1995, all with modest benefits.

    • The clinic evidence isn't randomized.

      A Cochrane review found no randomized trials of specialist clinic care, so part of the survival gap could come from who reaches a clinic.

    Hard questions

    Asked and answered.

    1. You might ask

      Isn't research money a long shot?

      Ryan

      Partly: many trials fail. But platform trials test more drugs for less, and gene-targeted work produced the first drug for a genetic form of ALS.

    2. You might ask

      Why fund care if it doesn't cure?

      Ryan

      Because care helps today. Breathing support gave some people more time than today's drugs, and most clinics run short of money.

    3. You might ask

      Won't better treatment shrink the need?

      Ryan

      The reverse. One model found that a drug adding six months of life would raise the number of people living with ALS by 37.8% by 2040, and every one of them needs care.

    4. You might ask

      Does breathing support help everyone?

      Ryan

      No. Once the swallowing and speech muscles are badly weakened, it eases sleep but is unlikely to add much time.

    In the slider

    See what your fortune could do here.

    ALS

    The slider prices this cause with these numbers:

    • About $63,693 covers a year of what ALS costs one person: medical care, home changes, paid caregiving and lost income.
    • The whole need is everyone living with ALS in the US, about 32,893 people.
    • That cost comes from an older study and isn't adjusted for inflation, so it understates today's, and care doesn't cure ALS.
    Try it in the sliderTalk to Ryan

    More of the Blueprint

    Keep reading.

    5 more chapters on the way

    Back to Keep 100

    Sources

    Every number in this chapter, and where it came from.

    1. Source 1: Amyotrophic lateral sclerosis estimated prevalence cases from 2022 to 2030, data from the National ALS Registry (Mehta and others) (opens in a new tab)

      Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 3 January 2025. Checked 16 October 2026.

      The CDC's National ALS Registry.

    2. Source 2: Amyotrophic Lateral Sclerosis (ALS) (opens in a new tab)

      National Institute of Neurological Disorders and Stroke, 13 March 2026. Checked 16 October 2026.

      The date the page was last reviewed.

    3. Source 3: Cost of illness for neuromuscular diseases in the United States (Larkindale and others) (opens in a new tab)

      Muscle and Nerve, 28 January 2014. Checked 16 October 2026.

      Costs in that study's dollars, not adjusted for inflation.

    4. Source 4: Health care resource utilization and costs across stages of amyotrophic lateral sclerosis in the United States (opens in a new tab)

      Journal of Managed Care and Specialty Pharmacy, 1 November 2024. Checked 16 October 2026.

      Insurance claims, so these are insurers' costs only.

    5. Source 5: The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France (Desnuelle and others) (opens in a new tab)

      Orphanet Journal of Rare Diseases, 31 March 2026. Checked 16 October 2026.

      A survey of fifty patients.

    6. Source 6: Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996-2000 (Traynor and others) (opens in a new tab)

      Journal of Neurology, Neurosurgery and Psychiatry, 1 September 2003. Checked 16 October 2026.

      Everyone with ALS in Ireland over those years.

    7. Source 7: A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland (Rooney and others) (opens in a new tab)

      Journal of Neurology, Neurosurgery and Psychiatry, 30 December 2014. Checked 16 October 2026.

    8. Source 8: Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial (Bourke and others) (opens in a new tab)

      The Lancet Neurology, 1 February 2006. Checked 16 October 2026.

      A small trial, of forty-one people.

    9. Source 9: FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene (opens in a new tab)

      US Food and Drug Administration, 25 April 2023. Checked 16 October 2026.

      An accelerated approval, based on a blood marker.

    10. Source 10: HEALEY ALS Platform Trial (opens in a new tab)

      Mass General Brigham. Checked 16 October 2026.

      The trial's own account.

    11. Source 11: New Report Quantifies Acceleration of ALS Research Following the Ice Bucket Challenge (opens in a new tab)

      RTI International, 14 June 2019. Checked 16 October 2026.

      An independent evaluation of the ALS Association's research grants.

    12. Source 12: Health Care Delivery and Financial Considerations in Amyotrophic Lateral Sclerosis Clinics: A Survey of Clinic Directors (opens in a new tab)

      Neurology, 30 January 2025. Checked 16 October 2026.

      A survey of sixty-one clinic directors.

    13. Source 13: Bridging the Funding Gap in Drug Development for Amyotrophic Lateral Sclerosis (opens in a new tab)

      Neurology: Clinical Practice, 4 May 2026. Checked 16 October 2026.

    14. Source 14: Clinical trials in amyotrophic lateral sclerosis: why so many negative trials and how can trials be improved? (Mitsumoto, Brooks and Silani) (opens in a new tab)

      The Lancet Neurology, 1 November 2014. Checked 16 October 2026.

    15. Source 15: Pridopidine in Amyotrophic Lateral Sclerosis: The HEALEY ALS Platform Trial (opens in a new tab)

      JAMA, 17 February 2025. Checked 16 October 2026.

    16. Source 16: Amylyx pulls ALS drug Relyvrio from market in US, Canada (opens in a new tab)

      Healio, 4 April 2024. Checked 16 October 2026.

    17. Source 17: Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease (Ng, Khan and Mathers) (opens in a new tab)

      Cochrane Database of Systematic Reviews, 7 October 2009. Checked 16 October 2026.

    18. Source 18: Amyotrophic Lateral Sclerosis Prevalence Projection in 2040: A Less Rare Disease (opens in a new tab)

      Annals of Clinical and Translational Neurology, 14 October 2025. Checked 16 October 2026.

      A model built on an Italian registry.