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, August 19, 2008

ALS Association Communication

Following is from an ALS Association communication issued today:

District Meeting Update

Thank you to everyone who already has scheduled meetings with their Senators over the August Congressional recess. So far, we have had great feedback as a result of this outreach. In fact, ALS Advocate Billy Dyle from Mississippi received a personal telephone call from Senator Thad Cochran (R-MS) over the weekend indicating that he will support S. 3297! Senator Cochran, who is the Ranking Member of the Senate Appropriations Committee, did not support proceeding to S. 3297 during the vote in July. Thanks to Billy’s outreach, we are now at least one Senator closer to securing the 60 votes we need to help pass S. 3297!

Billy’s successful outreach to Senator Cochran is an example of the difference your advocacy can make this summer. So if you have not already scheduled meetings with your Senators, please do so immediately! Your efforts can help us pass the ALS Registry Act this year!

As you schedule your meetings with Senators back in their home states, we wanted to let you know that the Advocacy Department has helped craft a coalition of other organizations to advocate for S. 3297. The coalition includes groups like the American Heart Associations and others who support legislation that also has been blocked by Senator Tom Coburn and which has been included in S. 3297. Our coordinated coalition activities will build upon your outreach over the recess. We will keep you updated on these efforts.

2008 I Took the Extra Step Advocacy Guide

To help you incorporate advocacy into your walk and walk kickoff events, we are pleased to provide you with the latest I Took the Extra Step advocacy guide. The attached guide includes instructions on how you can participate in this important campaign, which has generated tens of thousands of letters to Congress and helped Chapters recruit ALS Advocates to join their local advocacy efforts.

At this time, we are asking Chapters to focus on recruiting advocates at your events so please make available copies of the enclosed ALS Advocate sign-up form at your upcoming events. However, because our advocacy strategies may change when Congress returns from the August recess, please be sure to check with the Advocacy Department about two weeks prior to your event to ensure you have the most up-to-date materials.

Your participation in the ITES campaign not only produces results, but also empowers PALS and families with the tools and information they need to play a greater role in the Chapter’s year round activities.In the meantime, please contact us at
advocacy@alsa-national.org or 1-877-444-ALSA if you have any questions or would like assistance scheduling meetings or participating in the ITES campaign.

Thank you!
The ALS Association
Capital Office
601 Pennsylvania Ave., N.W. Suite 900, South Bldg.
Washington, DC

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