Support
Support network directories for ALS caregivers
Caring for someone with ALS can be rewarding, and it is also emotionally and physically demanding. A support network is not a luxury, it is part of keeping yourself well enough to keep going. This page lists the online groups, local groups, and caregiver organizations worth contacting first, each with a direct link. Pick one and start there.
How to use this page
Choose the format that fits your week. Online groups are there at two in the morning when you cannot leave the house. Local groups put you in a room with people who know your hospital and your county. Everything listed below is free to contact.
Online support groups
Guidebook you can download
The National Alliance for Caregiving publishes a Diverse Caregivers Guidebook. You can open the Diverse Caregivers Guidebook as a PDF and save or print it.
Social media groups
Facebook groups
Many dedicated Facebook groups connect ALS caregivers. Search for groups specific to your region or your interests to find a supportive online community.
ALS and MND support groups
Look for groups focused on ALS or MND on the social platforms you already use. These groups often give caregivers a space to share experiences, ask questions, and offer encouragement.
Local support groups
The ALS Association chapters
Many ALS Association chapters host in-person support groups specifically for caregivers. Check the chapter listing or contact your local chapter for meeting times and locations: als.org local support.
Hospitals and medical centers
Many hospitals and medical centers run support groups for caregivers of people with chronic illnesses. Ask your loved one’s doctor or the clinic social worker what is available near you.
Religious organizations
Churches, synagogues, mosques, and other religious organizations often host support groups for people facing serious challenges. These can offer a sense of community and emotional support during hard stretches.
Caregiver organizations
Support groups are not a care team
Other caregivers will tell you things no leaflet ever will. What they cannot see is your person’s medical picture. Take anything you hear about treatment, medication, or equipment settings back to the clinic before you act on it.
You are not alone in this. There are more people willing to help than it feels like at three in the morning, and reaching out to one of them costs you nothing.
Where to go next
Organizations, one page each
What each organization actually funds, who qualifies, what you need before you apply, and what they will not cover. Checked against their own sites rather than copied from a directory.
The ALS Association
Nationwide equipment program, plus state programs that differ sharply
ALS Network
California and Hawaii only. Equipment loans at no cost
ALS Ride For Life
A caregiver grant open nationwide, plus Long Island mobility help
HealthWell Foundation
Copay and premium help for prescribed medication, when the fund is open
Les Turner ALS Foundation
Chicago area, and their grants require care at one specific clinic
PAN Foundation and ALS
Merged into TotalAssist, which currently lists no ALS fund
Team Gleason
Communication devices, voice preservation, home automation. Pays vendors, never you
Educational content only, never a substitute for your care team. Group schedules and contact details change, so check with each organization directly.