ALS Advocacy

ALS Advocacy
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, March 26, 2009

Call To Action Regarding ALS Registry Funding From ALS Association

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

We need your help TODAY to continue funding for the national ALS patient registry. U.S. Representatives Eliot Engel (D-NY) and Lee Terry (R-NE) are circulating a letter requesting the House Appropriations Committee provide $5 million in funding for the national ALS Registry next year. We urge you to contact your Representatives today to request that they sign onto this critical letter and support their constituents in the fight for a treatment and cure for Lou Gehrig's Disease.

The text of the Engel-Terry "Dear Colleague" letter is available by clicking
here.

Representatives Engel and Terry have set a deadline of next Wednesday, April 1 for signing onto the letter. So please contact your Representative TODAY! A sample letter you can email to your Representative is available in the
Advocacy Action Center of our website here: http://capwiz.com/alsa/home/.

It is essential that your Representative knows how important the registry is to the ALS community in your state. They need to know that the ALS registry can help us find what causes ALS, how it can be treated or even prevented from occurring in the first place. They need to know that the registry can save lives.

Background
The ALS Association and advocates across the country have worked tirelessly to establish a national ALS registry at the Centers for Disease Control and Prevention. The registry will identify how many people are living with ALS in the country, and also collect information about the disease that is urgently needed to advance ALS research.

Thanks to the ALS community's efforts, we successfully enacted the ALS Registry Act last year to authorize this important project. And we have worked with Congress to secure funding to launch ALS registry pilot projects, including $5 million in the current year. However, much more needs to be done in order to continue the registry, build on the work underway and to enable the registry to begin collecting information on a broader scale.

While Congress has supported us in the past, there are many other programs competing for scarce dollars, and the current economic climate poses additional challenges to securing continued funding. Therefore, it is vital that you contact Congress TODAY. And tell your family, friends, and colleagues to do the same. With a deadline of next Wednesday for signing onto the Engel-Terry letter, the time to act is NOW.

If you have any questions or would like assistance reaching out to your Representative, please contact us at
advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.
Thank you!

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