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ALS Registry Act

Leon
  • By Leon · Yesterday at 2:00 pm
  • In National ALS Advocacy Day · 0 replies
  • I recall half-time with my enraged football coach. He said, you men own this game even if you're losing by 21 points. Like the ALS Registry Act S.1382 we may be behind in the score but this match-up is ...

ALS--A PRESUMPTIVE DISEASE FOR-ALL-VETERANS

timecard
  • By timecard · August 8, 2008
  • In ALS and the military · 1 reply
  • HAS ANYBODY HEARD ANY MORE ABOUT THE LEGISLATION THAT VA SECRETARY-JAMES PEARSE-SAID WOULD BE EFFECTIVE AUG. 1-TO MAKE -ALS -A PRESUMPTIVE DISEASE FOR ALL VETS. OUR VA OFFICE HERE IS MS. TOLD ME THEY ...

Need to talk?

missinmyangel
  • By missinmyangel · July 31, 2008
  • In Children and families · 0 replies
  • I lost my Aunt,47 ,on June 8th. I lost her physical being but have gained an Angel. I was a caregiver and AM a friend to anyone,afflicted by this horrible disease. Boh the diagnosed and their families ...

sensory symptoms

Gebbie
  • By Gebbie · July 23, 2008
  • In Familial ALS · 3 replies
  • I've recently been diagnosed with A.L.S. and would like to know if other people experience sensory manifestations. I have a numb feeling in 3 of my toes and across the top of one foot, and get burning ...

Pictures of the 2008 National Advocacy Day?

jon55
  • By jon55 · July 16, 2008
  • In National ALS Advocacy Day · 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 ...

H.R. 5454 Advocacy

ZenArcher
  • By ZenArcher · July 7, 2008
  • In ALS and the military · 0 replies
  • Please go to http://capwiz.com/alsa/home/ Under Find Your Officials enter your zip code and click Go. Ensure that Federal is selected and click your Representative. Click the link next to E-mail. As a ...

chronic lyme disease???

lauralee
  • By lauralee · June 30, 2008
  • In Children and families · 5 replies
  • I am new to posting on this board but I do read, but not all the time.....maybe this is OLD info so please forgive me.....has anyone heard anything about Chronic Lyme Disease?.....I read somewhere that ...

MDA/ALS Clinic Has been a Positive Light for me -

LeeDX
  • By LeeDX · June 25, 2008
  • In National ALS Advocacy Day · 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 ...

"I Believe They're Ahead of the Pack"

Eddiespaza
  • By Eddiespaza · June 21, 2008
  • In National ALS Advocacy Day · 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 ...

Lithium

lamere53
  • By lamere53 · June 13, 2008
  • In Familial ALS · 9 replies
  • We are a family of four who live in SOUTHERN New Jersey near Philadelphia. Already familiar w/the lithium results in the Italian trials, I am a recently-diagnosed male ALS patient who is DESPERATELY trying ...

Call to Action for All Veterans with ALS

ZenArcher
  • By ZenArcher · June 6, 2008
  • In ALS and the military · 0 replies
  • We are excited to announce that Jeff Faull, a veteran with ALS from our Greater Philadelphia Chapter and the Vice-Chair of The ALS Association's VA Issue Team, is scheduled to testify before the House ...

Contact your Congressman, Request support on H.R.5454

codeman
  • By codeman · May 30, 2008
  • In ALS and the military · 0 replies
  • Below is a Letter that I wrote my Congressman. Veterans with ALS need your help!!!. Please write your Congressman and ask for support in cosponsoring Bill H.R.5454. Thanks Bill Motley Honorable Congressman ...

What am I in for?

lamere53
  • By lamere53 · May 23, 2008
  • In Children and families · 19 replies
  • I'm worried about what lies ahead...my husband has been diagnosed with ALS. It started with his speech. We are waiting for the lithium trials to start. Any advice ...

Ken Patterson reaches Washington D.C.

BobbyB
  • By BobbyB · May 14, 2008
  • In National ALS Advocacy Day · 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 ...

So, you're going to write your Congressman?

BobbyB
  • By BobbyB · March 18, 2008
  • In National ALS Advocacy Day · 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 ...

WE NEED TO STEP UP TO THE PLATE AND WE NEED TO HIT BACK.

BobbyB
  • By BobbyB · March 18, 2008
  • In National ALS Advocacy Day · 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 ...

New informal survey on ALS and Environmental Exposure

gulfportgal
  • By gulfportgal · March 17, 2008
  • In ALS and the military · 0 replies
  • Same as the last one I did: anonymous 6 short questions data may go to Steve Perrin, Chief Scientific Officer for ALS TDI Go here to view the survey results: http://www.quibblo.com/quiz/13-fcSS/ALS- and-Environmenatal-Exposure ...

Banding Together for ALS

Tandamay
  • By Tandamay · March 16, 2008
  • In Children and families · 0 replies
  • My name is Linda Gibson – I am caregiver to my daughter, Marcie who has ALS – Lou Gehrig’s disease. A group of CALS (caregivers of people with ALS) and PALS (people with ALS) have decided we are tired ...

ALS TDI

gulfportgal
  • By gulfportgal · March 8, 2008
  • In Children and families · 0 replies
  • Here is a bit of information about ALS TDI: http://gulfportgalals.blogspot.com/2008/ 03/what-is-als-tdi.html Pat Harbachuk (CALS, sister) to Ruth Rogers (PALS, 5/15/47); Limb Onset Sx 8/11/04; Mis-Dx ...

Informal Survey of ALS vs. Occupations

gulfportgal
  • By gulfportgal · March 6, 2008
  • In Children and families · 2 replies
  • I have posted an informal survey of ALS versus different types of occupations/occupational exposure. If anyone would be interested in participating, it is a short 7 questions, and is totally anonymous ...

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