General Info

The following are sites with general information about ALS:

ALSA (Amyotrophic Lateral Sclerosis Association - US): http://www.alsa.org/ - Lots of general information about the disease, including:

• Resource Guides for living with ALS: http://www.alsa.org/als-care/resources/publications-videos/resource-guides/
• Webinars: http://www.alsa.org/als-care/resources/webinars.html
• Blog: https://alsadotorg.wordpress.com/

MNDA (Motor Neurone Disease Association - UK) : https://www.mndassociation.org/ - The UK's analog to ALSA - Lots of info, but realize that some is specific to the UK.

• Information resources: https://www.mndassociation.org/about-mnd/information-resources/information-for-people-with-or-affected-by-mnd/
• Links to other useful sites: https://www.mndassociation.org/about-mnd/information-resources/useful-organisations-and-internet-sites/

ALS TDI (Therapy Development Institute): https://www.als.net/ - A non-profit research organization dedicated to ALS, but also a very useful source for objective, up-to-date information about research, clinical trials, and treatments.

• Webinars: https://www.als.net/als-webinars/
• Nice list of links to additional info: https://www.als.net/als-resources/
• News: https://www.als.net/news/

NEALS (NorthEast ALS consortium - US): https://www.neals.org/ - One of the (the?) leading consortium of US sites doing clinical trials in ALS, but also a good source for objective, up-to-date information about science, research, and treatments.

• Webinars: https://www.neals.org/for-people-with-als-caregivers/educational-webinars/
• Links to other resources: https://www.neals.org/for-people-with-als-caregivers/online-als-resources/

Int'l Alliance of ALS/MND Associations: https://www.alsmndalliance.org/

• Talks at Dec. 2017 meeting: https://www.alsmndalliance.org/2017-meetings/

ALS Untangled: http://www.alsuntangled.com/

• Great site for objective information about alternative and off-label treatments. In particular, check out their Completed Reviews: http://www.alsuntangled.com/completed.html - just click on the name of the treatment to see the review, done by scientists and medical professionals in the field.

Facebook Groups:

• Amyotrophic lateral sclerosis (ALS) Support Group Page(: https://www.facebook.com/groups/193736900664817/
• ALS - Patient and Caregiver tips for every day living: https://www.facebook.com/groups/ALSPatientandCaregivertips/

Other Useful Sites - primarily about living with ALS:

• ALS from Both Sides: http://www.alsfrombothsides.org/index.html
• Seeking ALS Answers: http://seekingalsanswers.com/ (NOTE: use menus at top of pages, NOT links on right-hand side of pages - latter go nowhere)
• Your ALS Guide: http://www.youralsguide.com/
• Compassionate Care: https://ccals.org/
• ALS 411: http://nevastory.com/als411/
• ALS encyclopedia: https://iamals.org/encyclopedia-of-als-organizations/

Columnists I like:

• Rick Jobus: https://alsnewstoday.com/author/rick-jobus/
• Kristin Neva: https://alsnewstoday.com/author/kristin-neva/

Caregiver Resources:

• MDA ALS Caregiver Guide: https://www.mda.org/sites/default/files/publications/ALS_Caregiver's_Guide_P-531.pdf Excellent resource - Lots of good info - detailed table of contents makes it easy to find what you're looking for.
• Family Caregiver Alliance: https://www.caregiver.org/
• Caregiver Action Network: http://caregiveraction.org/
• National Respite Network: https://archrespite.org/