Discussion topics

National ALS Advocacy Day

Join this discussion to learn more about ALSA's annual National ALS Advocacy Day and Public Policy Conference and to share your Advocacy Day experiences with the ALS community. The discussion group also is a great way for Advocacy Day attendees to stay in contact with each other.

20 years and onward!

  • By SShack · New reply March 28, 2014
  • 6 replies
  • I just recorded my 20th year since I was told I had ALS and only 2 years to live! I was the first person in cyberspace to publish an ALS/MND website but the address had to be changed twice. Now the site ...

All 130 discussions...

Familial ALS

Discussion and support for people whose lives have been touched by familial ALS. Join the discussion to reconnect with friends and acquaintances from across the country, meet new people and find support from others who share the common bond of familial ALS.


  • By joeldude1 · New reply April 9, 2014
  • 5 replies
  • my sister is 4 years into he als she is vented/trach's/gtubed and home. she is 44 years old now she has familial als, her father and uncle died of this disease as well. i may be next, do not know. i am ...

All 85 discussions...

Medicare prescription drug benefit

On January 1, 2006 millions of Americans, including people with ALS, began to enroll in the new Medicare prescription drug benefit, the most significant change to Medicare in the program's history. For the first time, people with ALS now have access to Medicare coverage for Rilutek and other vital prescription drugs. This discussion topic is intended to provide the ALS community a forum to discuss the new Medicare prescription drug benefit, including what's working and what's not working and to share experiences - both good and bad - with the new prescription drug benefit.

Request for Deeana Protocol informartion

  • By kristelmp88 · New reply January 7, 2014
  • 2 replies
  • My father was diagnosed with ALS two years ago. I just read about this hopeful treatment named Deanna Protocol and I want to know more information about it. How to get this treatment and if it works in ...

All 19 discussions...

Children and families

Those in the ALS community know first hand that ALS is a family disease that impacts the person fighting the disease as well as their loved ones and friends. Join this discussion group to share your family's experiences and find support from others whose families have been impacted by this disease.

Fast Onset of ALS..Our Broken Dreams

  • By Giz · New reply yesterday at 3:53 am
  • 108 replies
  • Hello everyone.. My partner just got diagnosed with ALS. He just turned 50 in December. I am 45 years old. His symptoms started in march after a horrible kidney stone incident. Slurred speech was the ...

All 177 discussions...

ALS and the military

Studies have shown that those who have served in the military are at a greater risk of ALS than those with no history of military service. This discussion topic provides the ALS community a forum to share their thoughts about the connection between ALS and military service. An excellent discussion topic for veterans and non-veterans alike.

Talent Show for ALS, North Carolina

  • By ALH2013 · Posted April 13, 2014
  • 0 replies
  • Being a veteran during the Vietnam and Cold War eras, I am a veteran and I lost one of my supervisors in the Air Force a few months ago. I will bring some more details as they become available but have ...

All 61 discussions...

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