From: March of Faces
http://www.alsmof.org
ALS Advocacy Days May 15-May 17
05/30/2006
May 2006 and I had waited a year to get my feet on Capital Hill once again, this time in a power chair. The ALS Association had set the stage and at the top of the agenda was a bill called the ALS Registry Act. (H.R. 4033). This bill amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to: (1) develop a system to collect data on amyotrophic lateral sclerosis (ALS); and (2) establish a national registry for the collection and storage of ALS data.
This year, advocates from more than 48 different states attended the conference, including states such as Alaska, Hawaii, North Dakota, and Utah where ALSA does not have a Chapter. The 48 states are the most ever represented at the Advocacy conference! More than 90 people with ALS, an Advocacy Day record, made the trip to Washington DC and delivered the ALS story to Members of Congress on Capitol Hill. In addition to the 90 living with ALS four of those were veterans of the Persian Gulf War. We had stories to tell and our day on Capitol Hill could not come fast enough.
Day one would take us to the Lincoln Memorial for the candle light vigil. The next day would be spent in many different areas of research, medicare benefits and drug development. There will be five new drugs concerning ALS making their way to clinical trials across the country in the near future. (For information on Clinical Trails:) http://www.clinicaltrials.gov
In other sessions we would work on our strategy for the important day as those dealing with ALS would come face to face with their states Congressmen. By days end most were completely exhausted but we all knew we were there speaking for the almost 30,000 patients affected by ALS.
The ALS communities made a huge difference in advancing this year’s public policy priorities in Congress. Support for the bill has nearly doubled in just two weeks, with 171 total cosponsors currently in the House and 31 in the Senate. Moreover, many Senators and Representatives have sent letters to the House and Senate Appropriations Committees urging the Chairmen to support including ALS as a disease to be studied as part of the Neurotoxin Exposure Treatment Research Program (NETRP) at the Department of Defense.
Current Status: S. 1353 - The ALS Registry Act Senate 31 (12 R,19 D) H.R. 4033 - H.R. 4033, The ALS Registry Act - House 171 (61 R, 1I, 109 D)
Article by PALS Leon Peek
March of Faces
http://www.alsmof.org
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