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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.
Walk to D’Feet ALS Coming to a Community Near You!
- By KimHymes · Posted 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 ...
Medicare and Durable Medical Equipment
- By clary925 · New reply 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 ...
Turning off the respirator and choosing to die
- By jillhum · New reply August 25, 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 ...
Statins and ALS-like syndrome
- By eml256 · New reply August 22, 2007
- 2 replies
- Drug Saf. 2007;30(6):515-25. LinkOut Statins, neuromuscular degenerative disease and an amyotrophic lateral sclerosis-like syndrome: an analysis of individual case safety reports from vigibase.Edwards ...
CVS Drugstore & ALS
- By pjf · New reply June 22, 2007
- 4 replies
- Yesterday my CVS in FL asked if I would donate $1.00 to ALS! What a surprise & I had no idea this was in process. Is this a national program? CVS alone or in conjunction with others? Anything we should ...
A Day on Capitol Hill
- By rknt50c · New reply June 7, 2007
- 13 replies
- Following is a recap of our day on Capitol Hill on Wednesday. It's a blog-like journal, so it makes more sense when read from the bottom up. I was waffling about making the trek this year and am very ...
Changes to Medicare/Medicaid
- By KenSr · New reply June 4, 2007
- 3 replies
- I am outraged at the apparent lack of “advocacy” on the part of the ALSA Advocacy Department…and you should be as well. Has anyone received notification that Congress is about to change our very mobility ...
From the DesMoines Register - Rekha Basu
- By rknt50c · New reply May 20, 2007
- 3 replies
- Published May 18, 2007 Basu: ALS activists fight for research, cling to hope By REKHA BASU REGISTER COLUMNIST If you've ever toured the landmarks of Washington D.C., you know what an awe-inspiring experience ...
www.alscounts.com
- By rknt50c · Posted May 9, 2007
- 0 replies
- ALScounts will post a chronicle of Advocacy Day encounters on Capitol Hill on the Slog page at www.alscounts.com Enjoy. Perhaps this site will give some folks ideas for pitching a registry to our elected ...
Accessible Entrances on Capitol Hill
- By rknt50c · Posted May 7, 2007
- 0 replies
- In the past this has always been a frustrating problem for our little contingent trying to get from appointment to appointment on advocacy day. It was difficult to plan routes when you had no clue as ...
I CareForSomeoneWithALS
- By Charlie3 · New reply May 6, 2007
- 26 replies
- I had to compress the subject, I hope it's readable. I thought this Discussion might help me (and many others), but I'm hoping we can learn from the "I Have ALS" Discussion I started as well. Frankly ...
Medicare Bipap Changes
- By Oldchuck · Posted May 5, 2007
- 0 replies
- I got this rather disturbing notice through the polio website www.post-polio.org/ivun I don't know about you, but this will add considerable additional cost to me and my use of a bipap. I hope that the ...
PDUFA
- By rknt50c · Posted May 3, 2007
- 0 replies
- Earlier this week I read that one of the ALSA legislative priorities is for an extension of the Prescription Drug User Fee Act. The ALSA materials indicated that it is important for funding of the FDA ...
Advocacy Letters for the Senate
- By KenSr · New reply May 3, 2007
- 2 replies
- All right guys and gals, Many of you that are not going to DC but still want your voices heard, I have just received the letters from the Advocacy Department, pre-written, for you all to get filled out ...
Advocacy Conference Question
- By rknt50c · New reply April 25, 2007
- 1 reply
- To The Folks at ALSA -- Will there be a physical message board of any kind at the conference hotel where people can leave notes, meet-up information, etc.? It might be an easy way to help people who know ...
Modeltalker News
- By donhing · New reply April 21, 2007
- 2 replies
- Good news, see Tim's email. Start reading - http://www.asel.udel.edu/speech/ and my Wednesday, September 06, 2006 blog entry at - http://alsdon.blogspot.com/ ---------- Forwarded message ---------- From ...
Stem cell study zeroes in on ALS cause
- By donhing · New reply April 19, 2007
- 4 replies
- Stem cell study zeroes in on ALS cause Mutated nerve cells called glial cells may secrete the poisons that cause amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, researchers reported ...
help with news letter
- By akey · Posted April 9, 2007
- 0 replies
- Dear Amy, My husband passed away from ALS last month. What I think would have been helpful is when first diagnosed having the e-mail of Living-with-als would have been so helpful. If we had been giving ...
hotels in DC
- By JJ3 · New reply March 22, 2007
- 1 reply
- I'm planning a trip to DC with my sisters. I have a power wheelchair. Does anyone know what the most accessible hotel near the mall and Smithsonian is? We will have a van with a ramp but parking can be ...
Medicare - Medicaid
- By Charlie3 · New reply March 14, 2007
- 1 reply
- Wanda was finally accepted for social security, medicare and medicaid, but no one has explained how this works. I think the cost of medicare is deducted from her social security, and normally pays about ...
