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.

Tuesday, July 29, 2008

From the ALS Association Washington, DC office

From the ALS Association Washington, DC office

Let's Continue the Fight

By a vote of 52-40 yesterday, the Senate voted against proceeding to debate on S. 3297, the Advancing America's Priorities Act, which included the ALS Registry Act. Unfortunately, we fell eight votes short of the 60 that were required for the Senate to begin consideration of S. 3297.

The Senate still may return to the issue at a later date so the fight is NOT over. We already are working with Senate Majority Leader Harry Reid (D-NV) and our supporters in the Senate to find other opportunities to pass the ALS Registry Act as soon as possible this year so we need you to stay involved. Let's continue the fight.

We want to thank the thousands of advocates across the country who contacted their Senators over the past few days. Your outreach led 52 Senators to vote for the bill, including every Democrat present for the vote and three Republicans: Senators Norm Coleman (R-MN), Gordon Smith (R-OR), and John Warner (R-VA), who is the chief Republican sponsor of the ALS Registry Act. To see how your Senators voted, please visit the Advocacy Action Center of our website by clicking here or pasting this URL into a new browser window:

Next Steps
We still have an opportunity to pass S. 3297 and the ALS Registry Act this year so it's absolutely critical that yesterday's disappointment not deter us from our goal. We need to continue the fight to pass the ALS Registry Act this year!

Yesterday's vote was not a reflection of the support for the ALS Registry Act. Indeed, more than three fourths of the Senate are on record as supporting the bill, meaning that we still have the support to pass the Senate. Unfortunately, S. 3297 and the ALS Registry Act became caught up in a broader, partisan debate between Democrats and Republicans about issues not related to ALS, like energy, heating assistance and other issues before the Senate. Unfortunately, election year politics are impacting every issue debated by the Senate. Nevertheless, it is important that we hold Senators accountable for their votes as we continue our efforts to pass the ALS Registry Act.

Therefore, as we work with Senators on additional opportunities to move the ALS Registry Act forward, there are two important things you can do:
First, please thank your Senators who voted in support of us to advance S. 3297. It is important that our supporters know we appreciate their continued efforts to find a treatment and cure.
Second, we need to hold those Senators who voted against us accountable for their votes. We need to let them know that it is not acceptable to play politics with the lives of people with ALS.
Senators who voted against us used several different excuses, including that a single Senator - Senator Tom Coburn - has a right to block legislation. They also claimed that the Senate should debate energy legislation before considering S. 3297. We need to let Senators know that a vote against S. 3297 was a vote against people with ALS. That they chose to support Senator Tom Coburn instead of their constituents. That they voted to debate the price of gasoline at the expense of the lives of people with ALS. And that we will remember the vote.

Sample letters you can send are available in the Advocacy Action Center of our website. When you enter your zipcode on the site, the system will automatically generate the appropriate letter either thanking them for their support or holding them accountable for their opposition. Please send these letters today and help us send a strong message to the Senate. And please make sure to only contact the Senators from your state. After all, they are accountable to you! Click here to go to the Advocacy Action Center to send your letters or paste this URL in a new browser window:

Thank you again for your continued advocacy. Although yesterday's vote did not produce the results all of us had hoped for, we cannot be deterred. Let's continue the fight!

If you have any questions or would like additional information about this Update, please contact the Advocacy Department at or toll-free at 1-877-444-ALSA.

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