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.

Tuesday, March 9, 2010

ALSA Call To Action - ALS Registry Funding

If you have not yet viewed the Engel / Sebelius dialogue in the prior post, I encourage you to do so to add some context to this.

Following link was just tweeted by ALSAssociation:

March 09, 2010
Help Increase Funding for the National ALS Registry

We need your help TODAY to increase funding for the National ALS Registry. U.S. Representatives Eliot Engel (D-NY) and Lee Terry (R-NE) are circulating a letter requesting the House Appropriations Committee provide $10 million in funding for the 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

Representatives Engel and Terry have set a deadline of March 18, 2010 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:

While Congress has supported the Registry in the past, we cannot assume the funding will continue. That's because there are many other programs competing for scarce dollars and the current economic and partisan climate present additional challenges to securing continued funding for the Registry. Therefore, it is vital that you contact Congress TODAY. And tell your family, friends, and colleagues to do the same. Your outreach can help ensure that we can realize the goals of the ALS Registry - to help identify what causes ALS, how it can be treated or even prevented from occurring in the first place.

here to read the latest news on the implementation of the National ALS Registry.

If you have any questions or would like assistance reaching out to your Representative, please contact us at or toll-free at 1-877-444-ALSA.

No comments:

Post a Comment