ALS Registry Act Gains Support in Congress
November 1, 2006
Thanks to the efforts of PALS and families in North Carolina and across the country, we are now closer than ever before to passing the ALS Registry Act (H.R. 4033/S. 1353), legislation introduced in Congress that would establish a national ALS registry at the Centers for Disease Control and Prevention. To date, 208 Representatives and 48 Senators have cosponsored the bill – just short of the 218 needed for a majority in the House and 51 in the Senate!
A national ALS registry would collect vital information about people with ALS across the country, helping us to advance ALS research and improve the quality of care available to people with ALS. We are pleased to report that North Carolina’s Congressional delegation is well represented on the list of supporters of the bill. Senators Richard Burr and Elizabeth Dole have cosponsored the bill as have eight of their colleagues in the House, including: Representatives G.K. Butterfield (D-1st District - Williamston, Wilson, Tarboro); Bob Etheridge (D-2nd - Raleigh, Lillington); David Price (D-4th – Raleigh, Chapel Hill, Durham); Howard Coble (R-6th – Greensboro, Asheboro, High Point, Salisbury); Mike McIntyre (D-7th – Fayetteville, Wilmington, Lumberton); Melvin Watt (D-12th – Charlotte, Greensboro); and Brad Miller (D-13th – Raleigh, Greensboro).
Rep. Sue Myrick (R-9th – Charlotte, Gastonia) also has told us that she plans to cosponsor the bill when Congress returns to Washington after the November elections. However there are five other North Carolina Representatives who have not cosponsored the bill. And as they return home to campaign for your vote, it is important that they hear from their constituents. Therefore, we urge people living in the following Congressional Districts to contact their Representatives and ask them to cosponsor the ALS Registry Act before Congress adjourns for the year:
Rep. Walter Jones (R-3rd – Greenville)
Rep. Virginia Foxx (R-5th – Clemmons, Boone)
Rep. Robin Hayes (R-8th – Concord, Rockingham)
Rep. Patrick McHenry (R-10th – Hickory, Shelby, Spruce Pine)
Rep. Charles Taylor (R-11th – Murphy, Waynesville, Spindale, Hendersonville)
Letters you can e-mail to Congress are available in the Advocacy Action Center of The ALSA website, www.alsa.org/policy. The site will identify your Members of Congress for you and will allow you to send an e-mail directly to them. Please personalize the letter and let your Members of Congress know how this disease truly impacts their constituents in North Carolina! Congress will return to Washington for a short period of time after the elections in November so it is important that you contact Congress this month.
We also encourage everyone to sign-up to become ALSA Advocates via the ALSA website (www.alsa.org/policy/involved.cfm) and help us find a treatment and cure through advocacy. As an ALSA Advocate, you will receive information and action alerts that keep you up-to-date on the public policy debate in Washington and Raleigh, and provide you with the tools and information that will help you reach out to Congress where your action can make the biggest impact.
The Catfish Hunter Chapter is among the most vocal Chapters in the country in reaching out to our elected officials. Our advocacy efforts at National ALS Advocacy Day in May, at Walk to D’Feet events (more than 1,400 letters to Congress last year!) and at other events through the year have made a difference. Let’s continue the fight to find a treatment and cure for ALS through advocacy!
