Fight For A Cure For ALS

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caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
Hello

Are we checking with our Senators and Congressmen by clicking on this link?

http://capwiz.com/alsa/home

When you put in your zip code, it will list all of your representatives. It will also have a form letter that you can send to your senators and congressman. You can add your personal story to the letter or send it as it is. What is really great, if your reps have cosponsored the registry bill, it will be a thank you letter. If they are not cosponsors, then the letter will be to ask them to support it. You can also upload a picture to make it more personal.

There are several Senators that have not signed on so people in those states can really help by sending those letters!

Lets get the word out and thanks for all your help Cosponsor S. 1382, the ALSA Registry Act of 2007.

KEEP FIGHTING FOR A CURE. LIFE IS VALUABLE!

Prayers and Hugs to all,
Caroliney
 

swmn

Distinguished member
Joined
Apr 7, 2007
Messages
146
Reason
CALS
Country
US
State
Wi
City
marshfield
Thanks for the clear information

Hey caroliney -
I love your passion!
Hope you don't mind - but I just cut and pasted this post , and added the information about why the data base is needed - sent it to the 26 most compassionate, helpful colleagues I have in my school where I teach - sent them individually to not make any one feel part of a "Mass" -- it took a while - but the people I sent it to- they'll get the Job done here in WI!
Thanks for keeping us up on the details!
 

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
ALS must be stopped in its tracks today.

Thanks, but enough people have been suffering with this horrible disease. We can not just sit back and think others will do what we can do now ourselves.

Have seen what this horrible disease does first hand and it hurts me deeply to know that others may suffer with it, if we do not act on it.

Lets join together and make it happen now. We really need to fight this with all we have and let our Senators know how we feel today.

Thanks for all your help.

Caroliney
 

bdyle

Active member
Joined
Apr 3, 2007
Messages
62
Reason
PALS
Country
US
State
mississippi
City
picayune
Hold put on ALS Registry Act

I don,t know how many of you know, but the ALS Registry Bill was placed on the Senate calendar Thurs. to go to the floor for a vote. But Sen. Coburn from Oklahoma put a hold on the bill, it is my uderstanding from what the ALS assoc. told me is that the bill will not go any farther until they can get him to lift this hold. They are working with his staff to find out what his issues are with the bill. He is on the HELP committee that unamiously passed the bill to go to the Senate floor and now he places a hold on it.

Billy,
 

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
Als Registry Act

Billy,

I Heard This Also, But We Can Email Senator Coburn, And Let Him Know, Those In His State, Especially, How We Feel About This. Sample Letters Are Available That Have Key Messages And Can Also Be Personalized Through The Als Advocacy Action Center.

Thanks For Your Continued Support To Build An Als Registry Act.

Together We Can Make A Difference.

Caroliney:-d
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Can you tell me where you got this information? I've been trying for two days now to find proof of this and haven't been able to find anything. It's not that I don't believe you; I just don't want to go off without the right information. Below is the latest information I can find on S.1382

S.1382
Title: A bill to amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry.
Sponsor: Sen Reid, Harry [NV] (introduced 5/14/2007) Cosponsors (67)
Related Bills: H.R.2295
Latest Major Action: 12/4/2007 Placed on Senate Legislative Calendar under General Orders. Calendar No. 518.

Pasted from <http://thomas.loc.gov/cgi-bin/bdquery/z?d110:SN1382:>
 
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