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.

Wednesday, September 17, 2008

Communication from ALS Association - Action Item

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

Let's Pass the ALS Registry Act

With just a few weeks remaining before Congress adjourns for the fall elections, the time has come for the Senate to vote on S. 3297 and pass the ALS Registry Act. We anticipate that the Senate may hold a series of votes on S. 3297 at any time from now until the end of the month so it is absolutely critical that you reach out to your Senators TODAY. This may be our last chance to pass the ALS Registry Act this year and take the next steps in creating a national ALS patient registry.

Thanks to your continued outreach, we are now just five votes short of the 60 we need to pass S. 3297! So please go to the
Advocacy Action Center of our website and tell your Senators not to leave town until they pass this critical legislation. Let them know that people with ALS cannot afford to wait until next year. Let them know that politics should not come before patients' lives and that arguments that it costs too much are just excuses (the bill is an authorization and does not appropriate a single dollar!). And let them know you will be watching how they vote. Let's finish the job and enact the ALS Registry Act this year!

In addition to grassroots efforts, The ALS Association also has engaged in other advocacy efforts here in Washington. We helped to organize a coalition of more than 140 different organizations who recently sent a
letter to the Senate in support of S. 3297. Moreover, Oprah Winfrey has helped generate support for S. 3297 during her daytime talk show by requesting viewers urge Congress to support one of the bills included in S. 3297. These combined efforts, along with your grassroots outreach, are sending a loud and clear message that hundreds of organizations representing millions of Americans are in this fight together. We want the Senate to pass S. 3297 this year. So again, please contact the Senate today!

Finally, as you reach out to the Senate, we also want to emphasize how important it is for you to support S. 3297 and not advocate for the ALS Registry Act to be considered as a separate piece of legislation. Our supporters in the Senate have included the ALS Registry Act as part of S. 3297 in order to pass the bill this year. And it likely is the only way this can be accomplished, for there simply is not enough time remaining in this year's session to pass the ALS Registry Act as a stand-alone bill. In fact, if we do not unite behind S. 3297, Senator Tom Coburn will succeed in his more than two year quest to kill the ALS Registry Act. We can't let that happen. People with ALS can't afford to wait any longer.

Contact your Senators TODAY!

If you have any questions or would like assistance reaching out to your Senators, please contact the Advocacy Department at
advocacy@alsa-national.org.

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