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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.
Iplex
- By Eddiespaza · Posted September 9, 2008
- 0 replies
- September 11, 2008 DePaul University College of Law RE: URGENT APPEAL: Legal Assistance to the Disadvantaged legal aid/pro bono programs etc. Re: Class-action lawsuit Dean of the Law School ALS I am writing ...
ALS Advocacy News Updates
- By Leon · Posted September 5, 2008
- 0 replies
- I stumbled onto this site that is scanning and posting news and informative articles that relate to ALS Advocacy. http://www.alsadvocacy.com/ For example, Jonathan Eig, author of "Luckiest Man" has an ...
Pictures of the 2008 National Advocacy Day?
- By jon55 · New reply July 17, 2008
- 2 replies
- I have seen pictures of the past years, but I have not found many pictures of the 2008 National Advocacy Day in Washington. Does anyone know where these can be located or when they will be placed on the ...
ALS's only OVER 5 CLUB
- By Ranger · New reply July 6, 2008
- 6 replies
- We need to hear from PALS & CALS who have made the dx by doctors of 2 - 4 years a LIE. We need your data to share with the ALS community and ALS researchers. They need to know our numbers are growing ...
Thoughts & Goals
- By Charlie3 · New reply July 2, 2008
- 3 replies
- Hi All, I haven't written much in a while. Actually, I'm not much of a conversationalist in general terms. My wife and I have been reading everyones comments on here and other sites, as well as all I ...
MDA/ALS Clinic Has been a Positive Light for me -
- By LeeDX · Posted June 25, 2008
- 0 replies
- Anyone who struggles with insurance issues or finding 'help' for this disease difficult. I highly recommend getting in touch with a MDA/ALS Chapter in you area or region. I Registered with a Regional ...
Ken Patterson reaches Washington D.C.
- By BobbyB · New reply May 16, 2008
- 2 replies
- Ken Patterson reaches Washington D.C. Rolling Over ALS Ken Patterson Sr. has ALS. He is riding in a motorized wheelchair from Florida to Washington, D.C. This video is from YouTube. There is news clip ...
Lithium Blog
- By kaygoslinga · New reply March 29, 2008
- 5 replies
- I need some advice...Could anyone post a link to the 'best' blog they have found re: Lithium? My husbands lithium level seems to be staying at .2, even tho the doctor has been upping the dosage each week ...
WE NEED TO STEP UP TO THE PLATE AND WE NEED TO HIT BACK.
- By BobbyB · New reply March 24, 2008
- 1 reply
- we all have faces. but all the work that has gone into the als registry and then one man puts a stop to it. WE NEED TO STEP UP TO THE PLATE AND WE NEED TO HIT BACK. we are writing letters and sending ...
trach covers
- By pjf · New reply March 12, 2008
- 3 replies
- Is anyone aware of a comfortable trach plate or a trach cover? It should be soft. My husband has had a trach for seven months and it hurts every day when he moves his head. The plate in the front that ...
Progressive Bulbar Paralysis
- By Charlie3 · New reply February 13, 2008
- 30 replies
- Hi everyone. My wife was diagnosed with Progressive Bulbar Paralysis / Bulbar Palsy Nov. 6, 2006 by her neurologist. His diagnosis was confirmed by the ALS center in Charlotte, NC this month (16th). They ...
Rolling Over ALS Tour
- By Glenda · Posted February 11, 2008
- 0 replies
- For those of you who haven't heard about it... the Rolling Over ALS Tour is to raise awareness for ALS by traveling nearly 1000 miles from Orlando FL to Washington DC. The Tour will start on April 19 ...
saliva
- By johnfulbright · New reply February 10, 2008
- 1 reply
- I am considering having radiation treatment on my salivary glands. Has anyone had this done? What has your experience been? Does it work? How about Botox B? Has anyone tried the new Botox ...
Dr. Richard Olney
- By delli3 · Posted January 29, 2008
- 0 replies
- Hello, my mother past October 2006. Could anyone tell me if there is an update on Dr. Olney? Thanks Cathy daughter of Maureen Dellinger ...
Hoosier PALS, CALS, etc - Last Call for Feedback!
- By rknt50c · Posted December 20, 2007
- 0 replies
- If you live in Indiana, please take a moment and fill in the ALSA Advocacy Listening Survey at www.alsaindiana.org The deadline has been extended but today (Thursday, Dec. 20) is the last day to submit ...
Today show appearance Wednesday
- By jennyhoff · New reply November 12, 2007
- 1 reply
- News I recieved today- "Augie will be appearing on the Today Show on NBC this Wednesday morning (time TBA). Please show your support and tune in. He will be discussing his quest against ALS with MDA and ...
Leo's Story
- By LeeDX · New reply October 25, 2007
- 3 replies
- L. C. Greene, a reporter and videographer for the Inland Valley Daily Bulletin and Sun, was diagnosed with ALS on Aug. 16, 2006. Leo Greene is the recipient of the ALS Association Greater Los Angeles ...
ALS Awareness -- KenSr Style...
- By Glenda · New reply October 15, 2007
- 2 replies
- This announcement has been posted on other forums and I want to share it with all of you. For those of you who know my husband you will know this is Ken through and through... "We all think about all ...
Traveling by AIR with PAL
- By pjjack6 · New reply October 14, 2007
- 3 replies
- We want to know which Airlines has tie down for power wheelchairs. Somebody said that the new planes have tie down in 1st row area. They remove the existing seat for tie down. So that the chair stays ...
ABC’s Nightline to Feature Story About ALS
- By KimHymes · New reply September 23, 2007
- 5 replies
- On Wednesday, August 22 (tomorrow!), the ABC television show Nightline will feature a segment on Aimee Chamernik, a mother living with ALS. Aimee will share her story of how ALS has impacted her and her ...
