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.
- By jon55 · July 16, 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 ...
- By LeeDX · 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 ...
- By Eddiespaza · June 21, 2008
- 0 replies
- After nearly 1 full year of surfing on the Internet for answers & hope, I've seen a lot of encouraging scientific breakthroughs, yet none have even come close to delivering a basic and or effective treatment ...
- By BobbyB · May 14, 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 ...
- By BobbyB · March 18, 2008
- 1 reply
- Letters to Congress So, you're going to write your Congressman? Good idea. Make it a good letter. People who think members of Congress pay little or no attention to constituent mail, are plain wrong ...
- By BobbyB · March 18, 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 ...
- By kaygoslinga · March 6, 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 ...
- By pjf · February 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 ...
- By Glenda · 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 ...
- By delli3 · 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 ...
- By johnfulbright · January 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 ...
- By rknt50c · 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 ...
- By jennyhoff · November 6, 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 ...
- By LeeDX · October 18, 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 ...
- By Glenda · October 13, 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 ...
- By pjjack6 · October 3, 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 ...
- By Ranger · October 1, 2007
- 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 ...
- By KimHymes · September 4, 2007
- 0 replies
- During the next few months, over 100 Walks to D’Feet ALS are scheduled in communities across the country bringing together more than 65,000 PALS, families and friends united in finding a treatment and ...
- By clary925 · August 31, 2007
- 3 replies
- I ran across this article in the latest issue of "Quest," the MDA magazine regarding the proposed changes to Medicare affecting bipaps and respiratory equipment. It was encouraging to see that the MDA ...
- By jillhum · August 24, 2007
- 1 reply
- Hi. I have a question about the legality of choosing to turn off the respirator if one is tired of being on it. The respirator is considered an extraordinary measure. Does one have to have a living will ...
