Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, August 6, 2009

ALS Association Calls U.S. Citizens To Action

Following is from the ALS Association, Washington, DC, office:

ALS Registry Action Alert and Update

As Members of Congress head home for the month-long August recess, we need your help to increase funding for the national ALS registry.

The ALS Association secured a major victory last week as the Senate Appropriations Committee passed legislation that would provide $7,000,000 for the ALS registry! This represents a 40% increase in funding over last year and is a tremendous accomplishment considering the current economic climate and the fact that most other health programs were cut, eliminated or did not receive any increase in funding.

However, several more steps remain in the legislative process before this funding becomes law. Therefore, we need your help over the August recess to deliver a loud and clear message to your Senators: help find a treatment and cure for Lou Gehrig's Disease by voting for the FY 2010 Labor/Health and Human Services Appropriations Act, which would provide $7 million for the national ALS registry.

Please contact your Senators TODAY. Go to the Advocacy Action Center of our website,, to send a letter to your Senators and help make a difference in the fight for a treatment and cure.

Support Health CURE Reform

It's absolutely critical that you contact your Senators this August. Over the recess, much of what they hear will focus on "health care reform" and expanding coverage to the uninsured. While these are important topics in which The ALS Association is engaged, we must make sure Congress does not forget about the un-cured: people living with ALS who have no effective treatment available. We need Congress to direct attention to health CURE reform, not simply health care reform. After all, people with ALS need a treatment and cure as soon as possible and the ALS registry is a vital tool that can help us reach this goal. So please Contact your Senators TODAY!!

CDC Makes Progress in Building the ALS Registry

The ALS Association continues to partner with the Centers for Disease Control and Prevention as the Agency builds the national ALS registry. We are pleased to report that significant progress has been achieved as the registry pilot projects that were underway over the past several years are now complete. The Agency now is moving forward with the exciting next steps that include the pending launch of an online web portal, which will allow every person with ALS in the United States to easily enroll in the national ALS registry. A more detailed update on the ALS registry can be found

Enrolling in the Registry

Although enrollment in the ALS registry has not yet begun, The ALS Association is working with the CDC to ensure that as many people with ALS as possible enroll in the registry once it is formally launched. Therefore, we urge all PALS to sign-up as ALS Advocates via our website here: By selecting ALS registry when signing-up, PALS will be notified as soon as the registry becomes operational and they also will receive detailed instructions on how they can enroll.

In the meantime, please make sure to contact your Senators. The future of the ALS registry depends on Congressional funding. And that funding is only possible if you contact your Senators and let them know that people with ALS don't have time to wait!



  2. Here's something that seems like an easy opportunity for some healthcare reform. The minute that a G12.2 diagnosis hits a healthcare system, why isn't that person immediately referred to be enrolled in Medicare?

    It seems to me that 100% of American PALS should be in Medicare's files.