Grants for ALS Support Organizations 2026: 72 Funders
Quick Answer: If you're running an ALS Association chapter, an independent ALS foundation, an equipment loan closet or a respite fund for families living with Lou Gehrig's disease, grants for ALS support organizations come mostly from small private foundations, and they file those gifts under health.
Full answer and how we checked it
Grantsights analysis of 990-PF health grants pulled November 1, 2026 found 72 foundations that made 138 grants to ALS associations, chapters and patient support groups, totaling $1,033,838. The median gift was $1,015. Virginia (12 foundations), Illinois (10) and New York (7) lead, and California's free preview sample is The Martha Olson-Fernandez Foundation.
This guide is for executive directors, care services staff and board members at nonprofits that help people with amyotrophic lateral sclerosis (ALS) and their caregivers day to day: lending power wheelchairs and lifts, paying for home care hours, coordinating clinic visits, buying speech devices and running caregiver groups. ALS research institutes, university labs and hospital clinics aren't the focus.
Data note: The ALS counts come from a Grantsights search of 990-PF health grants, pulled November 1, 2026, for recipients or purposes naming ALS chapters, ALS foundations and ALS patient-service groups. Grantsights checked 40 matched health recipients by hand, and 38 were ALS Association chapters, independent ALS foundations or patient-service groups. The 2 misses were a university ALS clinic and a health sciences foundation. Research groups, hospital programs and gifts for one person's bills were left out of the pattern on purpose. The statewide health table later in the guide comes from a separate Grantsights pull of all 990-PF health filings, dated October 29, 2026.
In this guide (12 sections)
- 5 Kinds of ALS Support Groups and What Funders Back
- Grants for ALS Support Organizations: What 990-PF Filings Show
- ALS Grants by State
- Why the Health List for ALS Groups
- What Federal ALS Pages Don't Tell You About Support Funding
- What ALS Patient Services Foundations Pay For
- Budgeting an ALS Equipment Loan or Respite Program
- Common Mistakes in ALS Grant Requests
- An ALS Support Group's Funding Calendar
- Related Guides for Caregiving and Disease Support Groups
- FAQ: Common Questions
- Sources
Foundations near you already fund this work. See three in your state that take requests, with how to apply. Free, about a minute.
Foundations that fund this work
43,922 private foundations gave to hospitals, clinics, hospices and health charities
From their own IRS Form 990-PF filings (tax years 2019 to 2025). Pick your state to see who gave there, with one foundation in full. About the list
Across the US, these foundations gave 282,323 grants totaling $48,801,068,047.
Historical giving does not establish an open application or eligibility for your organization. For-profit operators should check each foundation's applicant rules before buying.
The full list names all 43,922, state by state: what each gave, to whom, for what, and a link to its filings. One payment, no subscription.
Foundations ranked for ALS associations, chapters and patient support groups in
Ordered by how many grants they made for this work in your state and to how many organizations, invitation-only foundations last. Foundations that gave to ALS associations, chapters and patient support groups come first. From their own IRS 990-PF filings.
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ALS support source review, Grantsights, November 1, 2026: Grantsights checked the text of 42 U.S.C. 426 (opens in a new tab), 42 U.S.C. 423 (opens in a new tab), 38 CFR 3.318 (opens in a new tab) and 42 U.S.C. 3030s-1 (opens in a new tab), the Centers for Disease Control and Prevention (CDC) page for the National ALS Registry (opens in a new tab), and the Administration for Community Living (ACL) pages on the Lifespan Respite Care Program (opens in a new tab) and the National Family Caregiver Support Program (opens in a new tab), against foundation filings that name ALS groups. Where official sources stop: no federal page prices a ramp, a ceiling lift or a year of overnight care, so a patient-services budget has to bring its own vendor quotes.
5 Kinds of ALS Support Groups and What Funders Back
Grantsights sorted the 38 hand-checked recipients into 5 rough groups, from chapters drawing $150,000 gifts to one-county funds living on checks under $1,000. Each needs a different pitch. This table is illustrative, not data: services and budgets differ a lot from group to group.
| Group type | Named in the filings | Biggest costs | What wins a gift |
|---|---|---|---|
| ALS Association chapter | DC/MD/VA, Connecticut, Greater Philadelphia, Wisconsin chapters | Care staff, equipment, support groups | Families served in a named region |
| Independent ALS foundation | Les Turner ALS Foundation (IL), ALS Hope Foundation (PA), ALS of Michigan | Clinic support, home visits, respite money | Long local history and named services |
| Equipment and technology group | Technology Against ALS (NJ), Team Gleason Foundation (LA) | Speech devices, eye-gaze systems, setup | Devices delivered and people reached |
| Family assistance fund | Compassionate Care ALS (MA), Shady Strong (NY), Jim "Catfish" Hunter ALS Foundation (NC) | Cash aid, home health hours, supplies | Direct help with a clear cap per family |
| Patient-led advocacy group | I AM ALS (DC) | Staff, outreach, patient networks | Voice of people living with the disease |
A small family fund shouldn't copy a chapter's pitch. Chapters sell reach across a metro area or a state. A one-county group sells speed: a hospital bed delivered in 2 days, a neighbor who answers the phone, a check that covers the home health aide this month.
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Grants for ALS Support Organizations: What 990-PF Filings Show
Grantsights analysis of 990-PF health grants pulled November 1, 2026 found 72 foundations that made 138 grants to ALS associations, chapters and patient support groups, totaling $1,033,838. According to IRS guidance on Form 990-PF (opens in a new tab), the return reports a foundation's charitable distributions, which is why every ALS gift named here can be checked against a filing. Be honest with your board about scale, though: 990-PF foundations are a helpful but minor source for most ALS groups. Walks, golf outings, memorial gifts from families and individual donors usually carry the budget, and some groups also bill insurers or hold contracts.
The average works out to about $7,500 a grant, and it misleads. According to the same November 1, 2026 pull, the median gift was $1,015, a quarter were $300 or less, and 101 of the 138 gifts (73%) were $5,000 or less. The 100 largest gifts held $1,028,251, so the other 38 added up to just $5,587. Plan first asks of $1,000 to $5,000 from local family foundations, not five-figure requests, and check each funder's past checks with how to read a 990-PF before you write.
A few gifts drive the total
The Kahlert Foundation's $150,000 gift in 2024 to the ALS Association DC/MD/VA Chapter, for patient support and access in Greater Baltimore, is 14.5% of the national total on its own, according to the November 1, 2026 pull. The largest gifts to clear patient-service groups are below:
| Foundation | ALS group | State | Amount | Filed purpose | Year |
|---|---|---|---|---|---|
| The Kahlert Foundation | ALS Association DC/MD/VA Chapter | MD | $150,000 | Greater Baltimore patient support and access | 2024 |
| Vishal Foundation | Technology Against ALS | NJ | $75,000 and $50,000 | Quality of life for people with ALS and locked-in syndrome through technology | 2024 and 2023 |
| Robert and Mary Jane Smith Foundation | ALS Association, Oregon chapter | OR | $30,000 a year | Health care | 2023 to 2025 |
| The Martha Olson-Fernandez Foundation | The ALS Network | CA | $30,000 | ALS patient care funding | 2024 |
| William J. McKee Charitable Foundation | Compassionate Care ALS | MA | $25,000 | Patient, family and caregiver support | 2023 |
| John S. and James L. Knight Foundation | I AM ALS | DC | $25,000 | General operations | 2024 |
| Harold and Rebecca Gross Foundation | ALS Association Connecticut Chapter | CT | $20,000 a year | Medical equipment | 2024 and 2025 |
These gifts tilt the state totals. Maryland shows $150,100 from 2 funders, and the Kahlert gift is nearly all of it. According to the same filings, 95% of New Jersey's $131,018 is Vishal money. A small group in Annapolis or Trenton shouldn't read either state as a deep pool.
Five-figure gifts within reach
For example, the Salkind Family Foundation gave the ALS Association Greater Philadelphia Chapter $20,000 in 2023 and again in 2024 for health and education programs. One organization in North Carolina, the ALS Association's North Carolina Chapter in Raleigh, received $20,000 in 2024 from the Eddie and Jo Allison Smith Family Foundation for medical programs and support. The Sidney and Bobette Guller Family Foundation gave the St. Louis chapter $20,000 in 2023, and the US Venture Schmidt Family Foundation gave the Wisconsin chapter $15,000 the same year.
ALS Grants by State
Virginia's 12 funders lead the count, but there's a catch: many of those gifts went to the ALS Association's national office in Arlington, not to a local group. Local and regional groups usually work through their own chapter or raise money on their own name. Each row below counts gifts from the November 1, 2026 pull by the recipient's state.
| State | ALS funders | ALS grants | ALS total |
|---|---|---|---|
| Virginia | 12 | 16 | $38,800 |
| Illinois | 10 | 15 | $8,753 |
| New York | 7 | 9 | $39,897 |
| Massachusetts | 6 | 8 | $67,080 |
| Pennsylvania | 6 | 8 | $54,900 |
| California | 5 | 12 | $73,265 |
| North Carolina | 5 | 5 | $21,430 |
| Oregon | 4 | 6 | $104,000 |
| Wisconsin | 4 | 8 | $26,705 |
| District of Columbia | 4 | 6 | $28,500 |
16 states, counting the District of Columbia, had 3 or more foundations giving to ALS support groups. Funder counts and dollars don't line up. Illinois has 10 funders and just $8,753, mostly small checks to the Les Turner ALS Foundation in Skokie; Illinois's free preview sample, the Kovler Family Foundation, gave it $2,000 in 2023 and 2024. Oregon has only 4 funders and $104,000, and the Robert and Mary Jane Smith Foundation's $90,000 over 3 years is about 87% of it.
Massachusetts is a one-group story. Its 7 largest gifts, $67,030 of the state's $67,080, all went to Compassionate Care ALS in Falmouth. The High Pointe Foundation, the state's sample, gave $7,500 in 2023, $10,000 in 2024 and $17,000 in 2025, a funder that raised its gift each year. Louisiana's sample, the WR Grace Foundation, gave the ALS Association in Baton Rouge $13,000 in both 2023 and 2024, and the Gary E. Milgard Family Foundation gave the Team Gleason Foundation $25,000 in 2023 for ALS patients in Washington State.
California's ALS funders
California's 5 foundations made 12 health grants to ALS groups worth $73,265, according to the November 1, 2026 pull. The free preview on the Grantsights health funder list for California leads with The Martha Olson-Fernandez Foundation, whose filings say it takes requests and list what to send and a contact. It gave The ALS Network $30,000 in 2024 and The ALS Association Golden West Chapter $20,000 in 2023, both in Woodland Hills and both for ALS patient care. That $50,000 is about 68% of the state's total.
The rest of California's gifts are small. Helpful Fish Private Foundation gave the ALS Association's Orange County office in Tustin $5,000 in 2023 and $3,500 in 2024. The Pearl Colman Foundation gave $500 and $1,000 to a Citrus Heights office. A California group outside the Los Angeles area should expect $500 to $5,000 checks.
Why the Health List for ALS Groups
Health is where tagged ALS money sits. Most gifts to ALS names in the wider November 1, 2026 search carried no cause tag at all, and much of that untagged money went to research and national campaigns. Among the gifts that did carry a tag, health led, so the health list is the right one for a patient-services group. Nobody hand-checked that wider search, so read it as a hint about where the money is filed rather than a firm number.
| State | Health grants on file | Foundations giving to health | Say they take requests | Typical health grant |
|---|---|---|---|---|
| New York | 34,563 | 9,879 | 2,025 | $5,000 |
| California | 27,604 | 6,824 | 1,451 | $10,000 |
| Massachusetts | 16,836 | 4,816 | 1,086 | $8,400 |
| Illinois | 12,856 | 4,248 | 1,045 | $5,000 |
| Pennsylvania | 12,224 | 3,362 | 865 | $6,000 |
| Virginia | 7,854 | 2,742 | 715 | $5,000 |
In these 6 states the typical health gift runs from $5,000 to $10,000, according to Grantsights analysis of 990-PF health filings pulled October 29, 2026. That's 5 to 10 times the $1,015 ALS median, which suggests many ALS gifts are small personal checks rather than program grants. A well-written request to a health funder that already supports local patient services can beat the ALS average. Between 20% and 26% of the health funders in these states say they take requests, so start there. One state's health list costs $29, $99 buys a year of every cause in every state, and either one is refundable within 30 days.
What Federal ALS Pages Don't Tell You About Support Funding
The 6 federal sources Grantsights checked explain benefits for people with ALS clearly. They don't say that none of them pays a local ALS group to deliver services. Grantsights found no federal grant program built to fund ALS support groups directly. Read the rules next to the filings and 6 lessons come out.
- Medicare starts sooner for ALS, but it isn't your revenue. According to the text of 42 U.S.C. 426(h), Medicare hospital coverage for someone medically determined to have ALS begins with the first month of disability benefit entitlement rather than the 25th. That helps families with medical bills, but Medicare pays providers, not support groups.
- The Social Security disability wait is gone for ALS. The ALS Disability Insurance Access Act of 2019, Public Law 116-250, enacted December 22, 2020, amended 42 U.S.C. 423 so Social Security Disability Insurance (SSDI) benefits for ALS start with the first full month of disability. Per the statute's notes, it applies to applications approved after the date 5 months before enactment. A group that still budgets emergency cash for a 5-month wait is planning around a gap that no longer applies to new ALS applicants.
- Veterans have a strong claim. According to VA regulations at 38 CFR 3.318 (opens in a new tab), ALS that shows up at any time after discharge is enough to establish service connection with the Department of Veterans Affairs (VA). The exceptions are affirmative evidence against it, willful misconduct, or less than 90 days of active, continuous service. A group that helps veterans file can unlock far more money for a family than any $1,000 grant.
- The registry partners, it doesn't fund your services. According to CDC's National ALS Registry page, the registry connects people living with ALS to clinicians and researchers, partners with organizations and funds outside research. Encouraging families to join helps research. It won't pay for your loan closet.
- Caregiver money flows through Area Agencies on Aging. According to 42 U.S.C. 3030s-1, the National Family Caregiver Support Program (NFCSP) pays states to let each Area Agency on Aging (AAA), or an entity it contracts with, offer information, counseling, support groups, caregiver training, respite and limited supplemental services. The federal share is 75%. The catch: respite and supplemental services go to caregivers of people 60 or older who meet the act's impairment test, and a person with ALS under 60 isn't an older individual under the act. Older relatives age 55 and up caring for an adult with a disability aged 18 to 59 can qualify.
- Lifespan Respite is small and run by states. According to the ACL page on the Lifespan Respite Care Program, ACL has made competitive Lifespan Respite grants to agencies in 39 states and the District of Columbia since 2009, and Congress set aside $10 million for the program in fiscal year (FY) 2025. Those grants go to eligible state agencies. An ALS group's usual way in is to join the state's respite provider list or voucher program, not to apply to ACL.
What federal pages rarely mention is that the fastest money for a local ALS group is still a stack of small foundation gifts, family memorial funds and event revenue. Federal programs pay individuals and state agencies. Local foundations wrote 138 checks in this pull, and 101 of them were $5,000 or less, so build a base of many small gifts before you chase a large one. The respite care programs guide shows how state respite networks pick their providers. The Grantsights grant database tracks open federal and state notices, including state respite and caregiver programs.
What ALS Patient Services Foundations Pay For
Grantsights checked the purposes on the 100 largest gifts in the November 1, 2026 pull against what patient-service groups usually propose, and 7 project types stood out.
- Regional patient support and access. The Kahlert Foundation's $150,000 went to patient support and access in Greater Baltimore.
- Communication technology. The Vishal Foundation's $125,000 over 2 years paid Technology Against ALS to improve life for people with ALS and locked-in syndrome through current technology.
- Medical equipment. The Harold and Rebecca Gross Foundation gave the Connecticut chapter $20,000 for medical equipment in each of 2024 and 2025. A chapter that lends gear can show a funder exactly what each check bought.
- Respite cash for families. ALS of Michigan's respite care assistance program, according to its funder's filing, pays up to $500 a month for home health care; the Christian Financial Outreach and Impact Foundation gave $500 toward it in 2024.
- Home health hours. The William M. Camp Foundation gave the Jim "Catfish" Hunter ALS Foundation in Hertford, North Carolina $1,000 in 2023 to help patients with home health care.
- Family and caregiver support. The McKee foundation's $25,000 to Compassionate Care ALS named patients, families and caregivers, and the Shapira Foundation gave ALS Northwest in Portland $5,000 in 2024 for support to children and youth, according to its filing.
- Direct financial and emotional help. The Tioga Downs Regional Community Foundation gave Shady Strong in Newark Valley, New York $15,000 in 2023 for awareness and financial and emotional support.
The lesson: name 1 concrete service, put a cap on what each family gets, and count families helped. Funders like the Smith, High Pointe and Gross foundations gave year after year, and their filed purposes are short and plain.
Budgeting an ALS Equipment Loan or Respite Program
Most ALS boards underestimate the cost of keeping donated equipment safe and moving: cleaning, storage, delivery, repairs and the staff time to match a lift to a home. Put those lines in before the first request goes out. This table is illustrative, not data: costs depend on your region, your inventory and how fast the disease moves for the families you serve.
| Budget line | Covers | Often left out? |
|---|---|---|
| Warehouse or storage | Space for wheelchairs, lifts, beds and shower chairs | Yes |
| Cleaning and repair | Sanitizing returns, batteries, parts | Yes |
| Delivery and setup | A van, a driver, a second person to lift | Yes |
| Device training | Setting up eye-gaze and speech devices, voice banking help | Sometimes |
| Respite stipends | Home health hours or a capped monthly payment | No |
| Care coordination staff | Clinic liaison, benefit filing help, home visits | Sometimes |
| Bereavement follow-up | Calls and groups for families after a death | Yes |
Report families served, devices lent and returned, average days from request to delivery, and respite hours paid. Funders use those to judge whether a $1,000 gift reached a real family.
Common Mistakes in ALS Grant Requests
These 6 mistakes show up when an ALS group asks like a research charity, and each can cost a $1,000 local gift.
- Pitching the cure. A common mistake is opening with research progress. Health funders who give to patient services want to know what a family gets this month: a lift, a ramp, 20 hours of care.
- Asking big funders first. A red flag is a $100,000 request to a foundation whose ALS gifts were $500. Read its past giving with how to read a 990-PF before you ask.
- Paying for gaps that closed. If your budget still covers a 5-month SSDI gap for new applicants, update it; that money may serve families better as respite or equipment.
- Missing veterans. Groups that don't screen for military service leave VA benefits on the table. The veterans organizations guide covers funders who back veteran-focused services.
- Ignoring the respite network. The respite care guide explains state respite programs and the funders behind them, which an ALS group can join as a provider.
- No plan for the end of life. Many ALS families end up in hospice care, and a group with a clear hospice partner tells a fuller story to funders. See grants for hospices for how they're funded.
An ALS Support Group's Funding Calendar
This 12-month plan suits a group running equipment loans, respite grants and caregiver meetings all year. Shift it around your walk or main event.
| Month | Action |
|---|---|
| January | Pull last year's families served, devices lent and respite hours |
| February | Meet your Area Agency on Aging about caregiver contracts and referrals |
| March to May | Send 15 to 25 requests to local health, family and bank foundations |
| June | Ask the state respite coalition how to join its provider list |
| July to September | Run the walk or event; collect stories with family permission |
| October to December | Report to funders, thank memorial donors and plan next year's equipment buys |
Related Guides for Caregiving and Disease Support Groups
The 72 foundations behind the $1,033,838 in this pull also give to other groups that keep seriously ill people at home. ALS groups with adult day programs or caregiver retreats should read grants for adult day centers, and those whose caregiver groups also serve families living with memory loss can compare funders in grants for dementia care programs.
Groups that lend equipment and help with home changes will find overlap in grants for disability services, and the family assistance model looks a lot like grants for cancer support organizations. For a broader view of health money, start with grants for health nonprofits. Patient groups organized around an inherited blood disorder raise money the same way, through chapters, walks and family foundations, as grants for sickle cell organizations shows.
FAQ: Common Questions
How many foundations give grants to ALS support organizations? 72 in the Grantsights search of 990-PF health grants pulled November 1, 2026.
How big is a typical foundation grant to an ALS group? The median was $1,015, and 73% of gifts were $5,000 or less.
Is there a federal grant for ALS support groups? Not directly. Caregiver and respite money flows through states and Area Agencies on Aging.
Do people with ALS still wait 5 months for Social Security disability? No. A 2020 law removed that wait for people with ALS.
Can an ALS group help veterans get VA benefits? Yes. VA rules treat ALS as service connected for most veterans with 90 days of continuous service.
Are ALS research groups covered in this guide? No. This guide covers patient and family services only.
Sources
- 42 U.S.C. 426, Medicare entitlement, including the ALS rule in subsection (h) (U.S. Code, 2024 edition) (opens in a new tab)
- 42 U.S.C. 423, disability insurance benefits and the ALS Disability Insurance Access Act notes (U.S. Code, 2024 edition) (opens in a new tab)
- 38 CFR 3.318, presumptive service connection for ALS (eCFR) (opens in a new tab)
- 42 U.S.C. 3030s-1, National Family Caregiver Support Program services (U.S. Code, 2024 edition) (opens in a new tab)
- CDC: National ALS Registry (opens in a new tab)
- ACL: Lifespan Respite Care Program (opens in a new tab)
- ACL: National Family Caregiver Support Program (opens in a new tab)
- IRS: About Form 990-PF (opens in a new tab)
Last updated November 1, 2026. Published by Grantsights from public sources. See our editorial policy, how we build and check guides, corrections and how we make money.
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