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Senior member
Feb 22, 2007
The Time Has Come to Pass the ALS Registry Act!

We have great news...the Senate is expected to vote on legislation that includes the ALS Registry Act as soon as this week! This is what we all have been working for. And it means that it's absolutely critical that you contact your Senators and urge them to join us in our fight for a treatment and cure.

Late yesterday, Senate Majority Leader Harry Reid introduced the Advancing America's Priorities Act (S. 3297). The bill includes the ALS Registry Act as well as other legislation that has been blocked from consideration by Senator Tom Coburn. For the past several months, we have worked closely with Senator Reid behind the scenes to move the bill forward and now we have an opportunity to take the next step and pass the ALS Registry Act in the Senate!

This is the opportunity we have been working toward. And it may be our last and only chance to pass the bill this year, so we need your help TODAY.

A sample letter you can send to your Senators is available on the Advocacy Action Center ( of our website. Please send the letter today and ask your Senators to vote for S. 3297, the Advancing America's Priorities Act, which includes the ALS Registry Act. Let them know that by voting for this critical legislation, they can help us find a treatment and cure for Lou Gehrig's disease. People with ALS don't have time to wait!

And please remember, only contact the Senators representing your state, for Senators are most responsive to their own constituents. If you don't know the names of your Senators, don't worry, the Advocacy Action Center will identify them for you.

After you send your letter, please forward this alert to your entire address book and tell your family, friends and colleagues to do so as well. We need as many people as possible to contact their Senators in support of S. 3297.

We will keep you up-to-date as the bill moves forward and the vote is scheduled. So please keep an eye out for our Action Alerts. We anticipate that several votes may take place and we will be asking you to reach out to your Senators before every vote!

We want to thank everyone in advance for their outreach. Together, we can pass the ALS Registry Act!

If you have any questions or would like additional information about this Action Alert, please contact the Advocacy Department at [email protected] or toll-free at 1-877-444-ALSA.

Fall Recess

The House and Senate begin a 1 month recess on August 9th. After that the focus will be on the upcoming election so little if anything will be accomplished when they return. In other words if the Registry isn't passed before August 9th it more than likely will not be until well into next year.
Thanks for posting this Jeff. I hope everyone takes the time to write to their senators/representatives TODAY. This legislation puts significant funding into ALS over the course of several years. It is important to all of us to see this passed, and give the one finger salute to Dr. Coburn.. ( not that I am bitter at him or anything :twisted:)
Andrea - wife of Pals Jim

I just sent the letter to my Illinois senators, and have asked all my family and friends to do the same. They are thrilled to have an actual task to support those of us with ALS! Thanks for all the work you do and for letting us know how we can be supportive in advancing the cause.
July 21, 2008

Coburn Holds Package | Summary and Reid Introductory Statement

Tomorrow Senate Majority Leader Harry Reid will introduce The Advance America's Priorities Act, otherwise known as the "Coburn holds" package. The following is Senator Reid's statement on the bill as prepared for delivery:

Mr. President, today I am joining with Senators Leahy, Lieberman, Feinstein, Inouye, Kennedy, Boxer, and Biden, to introduce an important bill, with provisions in a variety of areas - from advancing medical research in critical areas, to cracking down on child exploitation, to promoting important U.S. foreign policy goals, to helping improve America's understanding about the oceans. What unites this diverse package of bills? One thing - unprecedented obstructionism.

The bills in this package include initiatives that have broad bipartisan support. Initiatives that have passed the House by 411 to 3; by 422 to 2; by 416 to 0. Many of these initiatives had such strong bipartisan support that they passed the House and Senate Committee by voice vote or even by unanimous consent.

Under normal circumstances, they would have passed the Senate through a simplified and expedited unanimous consent process and become law. Maybe some would have required a period of brief debate before passing the Senate.

But, instead of allowing the will of the Congress and the American people to be heard, Republicans have obstructed one bill after another. Here are just a few examples of the legislation that this bill includes - and that Republicans are preventing from becoming law:

The Emmitt Till Unsolved Crimes bill: Would help heal old wounds and solve crimes that have continued to be unsolved and unpunished since the Civil Rights era.

The Runaway and Homeless Youth bill: Would provide grants for health care, education and workforce programs, and housing programs for runaways and homeless youth.

The Combating Child Exploitation bill: Would provide grants to train law enforcement to use technology to track individuals who trade child pornography. Establishes an Internet Crimes Against Children Task Force within the Office of Justice Programs.

The ALS Registry bill: Would create a centralized database to help doctors and scientists treat and hopefully find a cure for ALS/Lou Gehrig 's Disease, which afflicts 5,600 Americans every year.

The Christopher and Dana Reeve Paralysis Act: Would enhance cooperation in research, rehabilitation and quality of life for people who suffer from paralysis. Not only will this bill accelerate the discovery of better treatments and cures, but help improve the daily lives of the two million Americans who await a cure.

This is just the tip of the iceberg. These bills address important American priorities, have broad - virtually unanimous -- bipartisan support, yet, all have fallen victim to just one or two Republicans.

Senate Democrats are not willing to allow this obstruction of a few to block the will of the Congress and the American people any longer. Republicans will have a choice: Will they join the side of the American people, or continue to stand beside one or two colleagues intent on blocking progress? I hope Republicans will end their obstruction and work with Democrats this week to pass this crucial and long-overdue legislation.

The following is a list of bills included in the Advancing America's Priorities Act:

Health Education Labor & Pnesion (HELP) Committee Bills
Amyotrophic Lateral Sclerosis Registry Act (S. 1382/HR 2295)
Christoper and Dana Reeve Paralysis Act (S. 1183/HR 1727)
Stroke Treatment and Ongoing Prevention Act (S. 999/HR 477)
Melanie Blocker Stokes MOTHERS Act (S. 1375)
Vision Care for Kids Act (HR 507/S. 1117)
Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810/HR 3112)

Judiciary Committee Bills
Emmitt Till Unsolved Civil Rights Crimes Act (S. 535/HR 923)
Mentally Ill Offender Treatment and Crime Reduction Reauthorization and Improvement Act (S. 2304/HR 3992)
Drug Endangered Kids (HR 1199/S. 1210)
Reconnecting Homeless Youth Act (S. 2982/HR 5524)
Effective Child Pornography Prosecution Act (HR 4120)
Enhancing the Effective Prosecution of Child Pornography (S. 2869/HR 4136)
PROTECT Our Children Act (HR 3845/S 1738 )
Star-Spangled Banner and War of 1812 Bicentennial Commission (S. 1079/HR 1389)

Foreign Relations Committee Bills
Senator Paul Simon Study Abroad Foundation Act (HR 1469/S 991)
Reconstruction and Stabilization Civilian Management Act (HR 1084/S 613)
OPIC Reauthorization (HR 2798/S 2349)
Tropical Forest and Coral Conservation Reauthorization Act (S. 2020/HR 2185)
Torture Victims Relief Reauthorization Act (HR 1678/S 840)
Support for the Museum of the History of Polish Jews Act (HR 3320)

Homeland Security and Government Affairs Committee (HSGAC) Bills
National Capital Transportation Amendments Act(S. 1446/HR 401)
Preservation of Records of Servitude, Emancipation, and Post-Civil War Reconstruction Act (HR 390)
Predisaster Hazard Mitigation Act (HR 6109/S. 3175)

Commerce, Science & Transporation Committee Bills
Broadband Data Improvement Act (S. 1492/HR 3919)
Hydrographic Services Improvement Act Amendments (S. 1582/HR 3352)
Ocean Exploration, Mapping & Research (HR 1834/HR 2400/S. 39)
National Sea Grant College Program Amendments Act (S 3160/HR 5618 )
Integrated Coastal and Ocean Observation System Act (S. 950/HR 2342)
Federal Ocean Acidification Research and Monitoring Act (S. 1581/HR 4174)
Training for Realtime Writers Act (S. 675/HR 1687)

Environment Public Works Bills
Captive Primate Safety Act (S. 1498/HR 4933)
The Chesapeake Bay Gateways and Watertrails Network Continuing Authorization Act (S. 2707/HR 5540)
Beach Protection Act (S 2844/HR 2537)
Appalachian Regional Development Act Amendments of 2008 (S. 496)

Rules & Administration Committee Bill
Smithsonian greenhouse bill (HR 5492)
Hey Jeff,
Thanks for posting this. I've just emailed Senator James Webb (D-VA) and Sen. John Warner (R-VA) urging them to vote for S. 3297, the Advancing America's Priorities Act which includes the ALS Registry Act. Together we can have a strong voice and silence the voice of one.
ALS is non-partisan

As a Republican with ALS (yes, we get it too), I'm a little dismayed with this thread. The so-called "Advancing America's Priorities Act" is nothing but an Omnibus spending bill full of pork barrell & "re-elect me" government programs. Coburn isn't against the ALS registry, he just wants the Bill to be dissected & debated on the merits of each individual program contained in the Bill. Harry Reid is the one obstructing the ALS registry by lumping it in with a bunch of crap that he knows wont pass. Unfortunately, both parties do this & thats why the country is going broke & nothing gets accomplished.

My 2 cents (it's all I have left)
I will agree I wasn't very happy with the partisan manner in which this bill was presented however Coburn is against the ALS Registry. He is a member of the Health, Education, Labor and Pension committee and never voiced any issues with the bill during several meetings during which the ALS Association was present to answer questions. He then left just minutes before the vote to bring the bill to the floor.

Once the bill came to the floor then suddenly Dr. No has issues and places a hold. He didn't have time to ask for amendments while it was in committee because that would mean it would take away any bargaining power he would have if he placed a hold. Don't get me wrong I have nothing against either Republicans or Democrats I think they both have their merits and faults. I do however have something against Coburn, his narcissism and his low ball tactics. Its his way or the highway in his mind and I hope this bill is supported so strongly and vocally that it steamrolls that worthless piece of cow dung home with his tail between his legs.
Well, I do not see anything wrong with any of those bills so I am urging my senators to vote for the package. Thanks for keeping us up to date, Jeff.
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