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, August 6, 2008

ALS Association Communication

Following was an ALS Association communication issued today:

Dear Public Policy Chairs and Executive Directors,

Per this afternoon's Advocacy conference call, we encourage Chapters and advocates to schedule meetings with their U.S. Senators during the month-long August Congressional recess, which ends September 5. We want to use this opportunity to build support for the Advancing America's Priorities Act (S. 3297), which includes the ALS Registry Act. Our goal is to generate enough support for the bill so that we can pass the legislation when Congress reconvenes in September. This may be our only opportunity to pass the bill this year so your outreach is critical.

We are providing the attached District Meeting Guide to help you in this effort. The guide includes instructions to schedule meetings as well as talking points you can use. We also have attached "leave behind" materials you can provide to your Senators as well as background information that responds to the arguments Senators have used in opposition to S. 3297, including points that Senator Tom Coburn has raised. Finally, some Senators have raised concerns about the bills included in S. 3297. To help you respond to those concerns, below are a few quick facts.

Each of the 35 bills included in S. 3297 has broad bipartisan support; The bills that received recorded votes in the House (15 recorded votes) received on average 379 votes in favor, including an average of 159 Republican supporters; The bills that did not receive recorded votes were so non-controversial that they passed by voice vote in the House (18 voice votes in all)--For 11 of the bills (almost 1/3 of the package), a Senate Republican actually introduced the underlying bill; There is at least 1 Senate Republican co-sponsor on every bill; most have multiple Republican co-sponsors; The bills have seen extensive legislative action -- All of the bills have been marked up by the relevant House Committee, voted on the House floor, and/or considered by the relevant Senate Committee (most have had all three); Throughout the extensive legislative action, over 60 amendments to the underlying bills have already been considered by Congress; One bill has already passed the Senate and the House; Fourteen of the bills have been languishing on the Senate calendar, including the ALS Registry Act, since 2007; On average, action on the bills has been delayed 6 months.

We hope this information is helpful to you as you continue to reach out to your Senators this month.

Please don't forget to keep us updated on your meetings and send any feedback you receive to us using the Meeting Report form included in the Guide.

If you have any questions or would like additional information, please contact Pat Wildman at or 1-877-444-ALSA.

Thank you!

Capital Office
601 Pennsylvania Ave., N.W.Suite 900, South
Bldg.Washington, DC 20004ph: (202) 638-6997Toll-free: 1-877-444-ALSAfax: (202)

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