The ALS reference list for patients and caregivers below is not extensive. There are many on the web and many ALS groups on Facebook. There may be more groups on other social media platforms, too, like Instagram.
The Practical Guide to ALS
https://www.guidetoals.com
My own website (which you are on presently) for ALS sufferers and caregivers with useful information, critiques, and evaluations about equipment, medical information, and legal information. This is all based on what our son went through while suffering from ALS.
ALS News Today
A newsletter for the ALS community
https://alsnewstoday.com
Never Say Invisible
Our son’s website:
https://www.neversayinvisible.com
Our son’s book “Never Say Invisible” (Copyright 2022) detailing his ALS journey.
https://www.neversayinvisible.com/book/
ALS from Both Sides
Useful, but dated website with ALS information from Diane Huberty (nurse who has ALS) (posted 2020)
https://www.alsfrombothsides.org/index.html
ALS Untangled
ALSUntangled® was originally created or compiled by Dr. Richard Bedlack (Duke Univ). This is the ALS doctor at Duke University that our son went to in early 2020 and, after examining our son, told him to “Get your affairs in order”. When I checked this website in November 2025, Bedlack’s name and email address are only mentioned for people to submit ideas for review, so maybe someone else is running the website.
https://www.alsuntangled.com
From the ALSUntangled® website”
“Patients with ALS often consider alternative or off-label treatments (AOTs) they read about on the internet. Internet information about AOTs is not always accurate. In 2009, members of the North American ALS Research Group (ALSRG) started ALSUntangled® to scientifically review alternative treatments and help patients and families make more informed decisions about them.”
Contains a lot of info about ALS clinical trials and treatments, both legitimate and pure quackery. Worth reading this before you get sucked into a useless, expensive treatment that have no scientific merits. The website refers to “Ten Red Flags” (things to be wary of in alternative or off-label products):
Large out of pocket cost
Advertised as effective for multiple incurable conditions with different causes
Lack of safety and scientific oversight
Absent or limited informed consent process
Lack of an evidenced mechanism by which the intervention might help
Absence of regularly measured validated outcomes
Vague or no plan to present outcomes for peer review
The only evidence of benefit is anecdotes
Proponents have no relevant training, presentations or publications
Proponents portray themselves as victims, advise “divorce” from mainstream doctors
There is a drop-down menu “Future Reviews”, which has a lot of quackery listed. You can vote for any of them, so any entry can be pushed up higher on the table to make it look more popular, or more important.
“ALSUntangled® systematically reviews alternative and off-label treatments (AOTs) to try and help patients with ALS make more informed decisions about them. The basic structure of all our reviews revolves around a “Table Of Evidence” (see a section of this table below). In this, each AOT is graded across 5 different categories: mechanistic plausibility, preclinical models, cases, trials and risks. Grades in each category range from A (best) to F (worst), with U meaning we could not find any useful disclosable evidence for the AOT in that category. Final grades are crowd-sourced across an international team of more than 100 clinicians and scientists from across 11 different countries.“
My note: I could not find any key to the color coding in the ALSUntangled® chart below, but I assume the colors are just to make visualizing the letter grades easier, e.g., “A” is always green.
Patients Like Me
Website (PLM is a for-profit company!!)
https://www.patientslikeme.com
“We believe in the power of community to improve the lived experience of patients managing complex health conditions. Our purpose is to create a trusted digital platform that empowers patients to navigate their health journeys together through peer support, personalized health insights, tailored digital health services and patient-friendly clinical education.”
PLM revenue is generated through the following business activities:
1) Patient support programs
2) Research collaborations
3) Clinical trial support
4) Ad-supported platform
ALS Association
https://www.als.org
Provides patient assistance through a network of chapters, offers care through certified clinical care centers, and funds research.
This organization used to be a nationwide ALS organization, but in 2023 after bitter infighting, 15 chapters successfully sued to breakaway and then became an independent organization (see ALS United below).
ALS.org is the organization our family first went to after our son got ALS, so this website is a little more familiar to me than the others. I had first gone to the website’s reference page in 2023 at https://www.als.org/navigating-als/resources/books-interest (see list below), and discovered that some links were dead or went to unrelated websites. I wrote to them back then, but as of Nov 13, 2025, nothing has been updated. They have never responded to my emails about this. We don’t work with them anymore, but instead use ALS United (see below).
I AM ALS
https://www.iamals.org
Provides advocacy opportunities, virtual support groups, and guidance for families impacted by ALS.
ALS Therapy Development Institute (ALS TDI)
https://www.als.net
A research institute that focuses on developing treatments for ALS.
ALS United
https://als-ny.org
A network of member organizations that separated in 2023 from ALS.org. ALS-NY provides comprehensive, on-the-ground support for families. We have done ALS walks with this group since our son passed away in 2021 and have donated money.
Compassionate Care ALS (CCALS)
https://ccals.org
“Compassionate Care ALS (CCALS) is a nonprofit organization with a mission to support people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities, both physical and emotional, associated with the disease. The organization provides resources including equipment, educational opportunities, insurance and Medicare assistance, guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life when invited. CCALS offers an innovative approach to delivering support and services to our clients, which we tailor to the needs of each individual and their support network.”
My wife and I joined this group for a few months after our son passed away because it offered group grief counseling through online meetings. Eventually we felt we were not getting any benefit from it and dropped out. The group is in Eastern Massachusetts, but they accepted us from New Jersey.
Hope Loves Company (HLC)
https://www.hopelovescompany.org/camphlc
“Hope Loves Company is the only national nonprofit organization serving children impacted by ALS Lou Gehrig’s Disease. Our programs provide no-cost support, resources, and care for children ages 6-25, including family camp retreats, virtual hangouts led by mental health experts, and age-specific education to support children through their grief, loss, caregiving, and mental health journeys. Our children are equipped with healthy coping techniques, lasting connection, and a community that is hopeful. “
Les Turner ALS Foundation
https://lesturnerals.org
“The Les Turner ALS Foundation was founded in 1977 by the family and friends of Les Turner, who was diagnosed with ALS at the age of 36. At the time, information and research on ALS was almost non-existent, leaving families without guidance, support, or hope in the face of this terrible disease. They set out to raise funds to provide vital research and resources to people living with ALS and their families, which led to the establishment of one of the nation’s first ALS research laboratories at Northwestern Medicine in 1979.
Today, the Les Turner ALS Foundation is the Midwest’s leading ALS organization. Our support services team helps people living with ALS receive the best quality of care and access to the most promising therapies, and our online support groups, educational resources, and webinars reach an international audience. Our Les Turner ALS Center at Northwestern Medicine is led by the most well-respected scientists and clinicians in the field, advancing research into causes, treatment, and cures for the disease.”
LiveLikeLou Foundation
https://www.livelikelou.org
“Supporting families affected by ALS, funding ALS research to find treatments or a cure for Lou Gehrig’s disease, and honoring Lou Gehrig’s legacy.”
Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS)
https://neals.org
“Our mission is to accelerate the development of new treatments through innovative research and working collaboratively with people living with ALS and all stakeholders in the ALS research community.”
National Institutes of Health (NIH) – National Institute of Neurological Disorders and Stroke (NINDS)
https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als
“The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease for all people. NINDS conducts strategic planning to guide and coordinate research, both across the Institute and on specific topics. NINDS funds and conducts neuroscience research training and career development programs to ensure a vibrant and talented neuroscience workforce.”
Target ALS
https://www.targetals.org
“Our mission is to break down barriers to ALS research to find effective treatments. By uniting academia, the pharma and biotech industry, government, venture capital, related nonprofits, and the ALS community, we aim to overcome the challenges that have long hindered progress, bringing hope and tangible advancements to those affected by this devastating disease.”
ALS – Patient and Caregiver tips for every day living
Facebook group
I joined in 2018, and began writing helpful posts for this group based on all the things I was learning while caring for our son. I eventually created my website that you’re on right now with the link: https://www.guidetoals.com from all my posts. Many people go to this Facebook group with questions because they get quicker answers than by going to a real ALS clinic. When someone asks a question, I will reply with a link to an appropriate article that is already on my website. You have to be careful with the advice you get on the Facebook site, and sometimes there are spam posts for quackery, although the admins are doing a really good job of keeping them off the site.
