ALS Facebook Groups

Bryan “BWayne” Galentine was an incredibly compassionate and loving person. Throughout his experience with ALS, BWayne radiated positivity and warmth. He was driven to ensure that every person impacted by this disease were aware of the community support available to them. We honor and remember him through this resource increasing transparency of the social media communities available to support those impacted by ALS.

The ALS community is filled with spaces, both physical and virtual, set up to support you as you navigate being impacted by ALS, including Facebook groups. Facebook groups can be overwhelming. We have created this resource to help you explore which groups may be a good fit for you as a person living with ALS, a caregiver to someone with ALS or a loved one navigating ALS. The information posted in Facebook groups does not represent the views of I AM ALS and has not been verified by us. Please discuss questions and decisions related to your diagnosis and medical care with your health care team.

Support for People Living with ALS

• Living with ALS – for pALS Only is a group for people living with ALS to connect and openly discuss matters surrounding living with ALS.
• The Brighter Side of ALS (People with ALS Only) is a group for people living with ALS to connect and communicate with each other.
• The Lighter Side of ALS is a group for people living with ALS to come share in humor, happiness and more.
• Laughing in the Face of ALS is a group for those who have been diagnosed with ALS to discuss, cuss and laugh about living with ALS.
• This is ALS was started by Lori and Brian Andre. Brian was diagnosed with ALS in the fall of 2016. This group is intended for people living with ALS, caregivers, advocates or community members that have been touched by ALS. Our posts provide important news and information about ALS.
• Amyotrophic Lateral Sclerosis (ALS) Support Group Page is a group for people dealing with or have family with ALS.

Caregiver Support

• ALS Caregivers is a group where family and friend caregivers for people with ALS to share ideas, resources and contacts.
• ALS Spouse Caregivers Support Group is a group specifically created for caregivers whose spouses only (whether legally married or not) havve been diagnosed withh ALS.
• ALS FTD Caregiver Support Group is a group for anyone who is currently caring for someone with both FTD and ALS and anyonw who has cared for a loved one with FTD and ALS in the past.
• Still Standing is dedicated to people who have lost a loved one to ALS.
• Sarah’s Caregiver Community is a group to support, encourage and share resources for caregivers.
• CALS Widows is a private place for widows and widowers t0 share their unique journeys of living after losing their spouses to ALS.

Veterans

• US Vets with ALS and Caregivers is a group for US Veterans, spouses and caregivers to exchange helpful information and provide support.
• Veterans with ALS (VALS) is a group to collect information and get faces of veterans impacted by ALS out into the public.
• Veterans with ALS and Caregivers Network.

Women Diagnosed with ALS

• ALS Forum for Women (Lou Gehrig’s Disease) is a group only for women who have been diagnosed with ALS and women who have a loved one that already has been diagnosed.
• Her ALS Story is a group for women who were diagnosed with ALS at a young age and want to join the advocacy fight against ALS.

Familial ALS

• Familial (hereditary, genetic) ALS/MND Support Group is a group where people affected by FALS (Familial/Hereditary ALS/MND) can discuss the issues unique to that condition.
• C9orf72 support group for carriers, caregivers, and those at risk is a private group for C9orf72 carriers, caregivers, friends/family, and anyone else who wants to know more about this gene mutation. It’s a place where members can gain support and find information.

Clinical Trials/Treatments

• ALS Clinical Trials and Research is a group to understand the processes that lead to drug approval, share info about upcoming clinical trials and share evidence-based information and research papers about ALS.
• ALS Radicava User Group is an ALS community-run group to discuss the recently approved drug for ALS, Radicava, (Edaravone).
• BrainStorm Trial Participants and Families is a group created for a private, safe place where trial participants and their families can discuss things relating to BrainStorm.

Supplements

• Pills for PALS is a group to learn about and share supplements for people living with ALS and other healthy discussions.
• Pot for PALS is a group sharing information about medical marijuana (MMJ) for people with ALS.
• ALS Naturally is a group for people living with ALS and their caregivers who believe that ALS can be stopped and revered using testing, natural supplements, treatments, prayer, and techniques.

Equipment

• ALS – Equipment Exchange is a portal for ALS-related patients/individuals/families to post about the equipment they would like to donate, sell or post requests for equipment.
• ALS Preferred Equipment is a group where ALS caregivers or people living with ALS can post equipment or ideas that have helped them.
• ALS Trach and Vent Support is a group for people living with ALS who are trached/vented and their caregivers.
• ALS Equipment Donations is a group for people who have equipment that would like to donate it to people with ALS.
• Ask Me, I’m an AAC User! is a group where AAC (augmentive and alternative communication) users are the authority on AAC and here AAC users, SLPs, support staff, doctors, parents, family, and others who are interested in AAC can ask questions and get advice and some insight from actual AAC users.
• Part-Time Wheelchair Support Group is a discussion, support, and information/resource network for those of us who are required to use wheelchairs, scooters, walkers, walking sticks, crutches etc. on a part-time basis.
• Wheelchair and Mobility Aid Users Group is open to all wheelchair users, mobility aid users as well as caretakers and family members of those who use wheelchair and/or mobility aids.
• Tobii Dynavox Community is the place to look for support, crowd source your questions and connect with others in the AAC and assistive technology community. This group is moderated by the Tobii Dynavox Community Team.
• Smart Box Community is a place for our users, their families and professionals to share ideas, ask questions and chat with members of the Smartbox team.

Travel

• Traveling with ALS is a group to help ALS patients and their families find information about traveling with ALS.

PEG

• Feeding Tube Families is for caregivers of children or adults with feeding tubes. This could be parents, grandparents, aunts, uncles, and family members that are involved in DIRECT care, etc.
• Feeding Tube Support & Friends is for Feeding Tube users and their caregivers. Please feel free to share your trials & tribulations, ask questions, and offer advice and support to others.
• PEG Tube User Group was established by Keith Yaxley for PEG tube users, their families, friends and caregivers to share experiences, information and concerns.
• Adults with Feeding Tubes Support Group is for adults living with conditions that require enteral or parenteral nutrition. All tubies are welcome – NG/NJ/PEG/PEGJ/J/TPN.

Trach Groups

• Tracheostomy and Respiratory is a spot for all that’s in this boat, feel free to add your comments, good, bad, it doesn’t matter.
• Tracheostomy Warriors Support Group is for posting questions or advice regarding management of patients with a Tracheostomy.

Work/Personal Life

• PWD Job Opportunities (Persons with Disabilities) Disability Inclusion hopes to create an INCLUSIVE workplace for all, and we are passionate about connecting People With Disabilities to work opportunities.
• disABILITY friendship & dating (for all abilities) is a group for everyone looking for good friendship/love with disabled people.

Related Diseases

• Primary Lateral Sclerosis (MND) is for PLS sufferers and their carers only.
• Primary Lateral Sclerosis (PLS) Worldwide was created for the purpose of connecting patients worldwide diagnosed with PLS.

General Support for Anyone Impacted by ALS

• Living with MND, ALS & PLS is a group for anyone interested in learning more about MND, ALS or PLS and for supporting those living with these diseases.
• Life with HSP, PLS & ALS is a group for those who need support with HSP, PLS & ALS and also with others not understanding you.
• ALS We Are in it Together is a group for the ALS community to come together safely and peacefully and provide information, express opinions and offer support to others.
• ALS Family of Faith is a faith-based non-profit organization that has been created by Steve Cochlan, who is also battling ALS. They offer free counseling services to anyone who has been affected by ALS.
• Better Days with ALS is a group for people who have ALS or MND and those who know someone with these conditions to come out and share motivational, lighthearted and even humorous stories and videos about people with neurological disabilities.
• ALS – Patient and Caregiver Tips for Everyday Living is a group that shares knowledge so that ALS patients and caregivers can live an abundant life until ALS cures are found.
• ALS Tips, Support & Kindness is a support group for the ALS community.
• Keep Fighting Against ALS! is a group to spread awareness of the devastating disease ALS in hopes that each member will spread the word as well.
• Kids4Cure is a nonprofit organization founded by Christian & Paul Carey in 2004 at the ages of 11 & 13. They have raised over $1M for ALS patient services and research.
• Lou Gehrig’s Disease is a group to help raise awareness of ALS.
• No More Excuses is a group highly focused on a lack of transparency in ALS and gaining urgent access to several new ALS therapies as soon as possible.
• Our Lives with ALS is a group for those impacted by ALS to share their stories.
• GALS – Greg’s ALS Page is a group built by Greg who is a person we have lost to ALS.
• ALS Support Group without Censorship!
• ALS Warriors.
• ALS Families with Children is a group created for emotional support for people who live with, caretake for and love someone who is fighting ALS while still raising a family with young children.
• Bulbar ALS Support Group is for patients with ALS and their caregivers.
• Amyotrophic lateral sclerosis (ALS) Support Group Page(: is for people dealing with or have family with ALS.
• Ask Disabled Folks – For Disabled Folks is for disabled people to be able to ask other disabled people questions about so many different things.
• West Texas ALS Support Group (Lubbock Community ALS Support Group) was created for people diagnosed with ALS, the family members, and caregivers. Support group meets the second Tuesday of each month.