Wednesday, October 17, 2007


Housee of Representatives Votes to Create National Registry for Lou Gehrig’s Disease!

(Live web feed)

The House of Representatives took a major step in the fight against Lou Gehrig’s Disease on October 16 when it passed The ALS Registry Act (H.R. 2295) by an overwhelming 411-3 vote. The legislation would establish the first ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis, to be administered by the Centers for Disease Control and Prevention. The registry would collect information leading to the cause, treatment and cure of the deadly neurological disease that took the life of baseball legend Lou Gehrig in 1941. “This is a tremendous victory for people with ALS and their families across the country,” said Steve Gibson, vice president of Government Relations for The ALS Association. “With today’s vote, the House of Representatives has made it clear that our nation is committed to finding a treatment and cure for ALS.” It has been more than 65 years since Lou Gehrig lost his life to ALS. Although more is known about the disease today, there is no known cause or means of prevention, nor is there an effective treatment or a cure. In fact, the prognosis for a person living with ALS today is nearly the same as it was for Gehrig: death in an average of two to five years. “Unfortunately, families across the nation face the challenges and experience the suffering associated with ALS every single day,” said U.S. Representative Eliot Engel (D-NY), who introduced the ALS Registry Act and whose grandmother, Dora Engel, is believed to have succumbed to ALS. “The establishment of a registry will bring new hope to thousands of patients and their families that ALS will no longer be a death sentence.” The ALS Association worked closely with Congressman Engel and Congressman Lee Terry (R-NE) to introduce the ALS Registry Act. “Representatives Engel and Terry have led the fight for the ALS Registry Act,” said Gibson. “Their leadership in building support for bill, combined with the tremendous grassroots outreach of advocates from across the country, led to today’s historic bipartisan vote. People with ALS can be reassured that Congress has heard their message loud and clear.” Gibson noted that the bill also will benefit our nation’s military veterans. “Although ALS can strike anyone, regardless of their age, gender, race or nationality, recent studies have shown that the disease strikes military veterans at approximately double the rate as the general population. A national registry will enable us to learn why our veterans are at greater risk of ALS so that we can take action to help them and to protect the lives of our heroes serving in the military today.” The ALS Registry Act enjoyed broad bipartisan support leading up to the vote as more than 275 Representatives had cosponsored the legislation. During debate on the bill, Members of Congress praised the work of The ALS Association and the advocates who have shared their stories and put a face on the disease. “I would like to thank the tireless efforts of The ALS Association and advocates in educating and advocating for a cure, which is what we all want,” said Representative Vito Fossella (R-NY). “We need to give scientists the tools they need to find the treatment and cure for ALS. The registry does just that.” Congresswoman Stephanie Herseth (D-SD) related the story of her visit with the Thorson family who had made the trip to Washington, DC for The ALS Association’s Advocacy Day in May 2007. “I was struck by their 12-year-old granddaughter, Elizabeth, who sees how the disease has affected her grandfather and sees her grandmother caring for him. Elizabeth wrote an essay for school entitled, ‘If I Had a Million Dollars, What Would I Buy?’ And Elizabeth dedicated her entire essay to buying supplies for her grandfather, funding research, and advocating to Members of Congress,” said Rep. Herseth. She continued, “By establishing a national ALS registry…we can help facilitate the efforts of so many across the country, like Elizabeth, like the scientists searching for a cure, who are working to conquer ALS and bring comfort to those afflicted with it.” Congressman Lee Terry, the lead Republican sponsor of the ALS Registry said “I am moved every year when I am visited by patients and their families in my Washington office. Despite the extremely challenging medical conditions faced by these patients, they make an extraordinary effort to travel to the Capitol and share their stories in the hope that we will soon find effective treatments and a potential cure so that no one like them will have to suffer in the future. The courage shown by ALS patients, as well as their families, is inspiring to me.” And it was the personal stories of people with ALS that also inspired Representative Patrick Murphy (D-PA), who spoke of Shelbie Oppenheimer, a person with ALS who testified before Congress during the ALS Association’s Advocacy Day in 2002. “This fight is personal for me, as my good friend Shelbie Oppenheimer, and her husband Jeff have long been advocates for those with ALS,” said Murphy. “Jeff and Shelbie, along with their daughter Isabel, are a constant inspiration to me and I join them in the fight to turn ALS from a disease to a memory.” Representative Engel concluded, “I wish to express my gratitude to the staff of the Centers for Disease Control and Prevention, and in particular to The ALS Association, who worked for months with me and my staff to improve the bill we had introduced in the previous 109th Congress.” “I urge swift passage of the ALS Registry Act, H.R. 2295, today.” Senate Majority Leader Harry Reid (D-NV) has introduced companion legislation (S. 1382) in the US Senate where a bipartisan majority of 58 Senators have cosponsored the bill. “We hope that the Senate will follow the House’s lead and pass the ALS Registry Act as soon as possible,” said The ALS Association’s Gibson. “People with ALS don’t have time to wait.” The Association is the only national not-for-profit health agency dedicated solely to the fight against ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). The ALS Association is fighting on every front research, patient and community services, public education, and advocacy to improve living with ALS. The mission of The Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Video footage of Congressman Eliot Engel’s remarks on the House floor is available here <> and the text of the debate that preceded the vote is available here <> . <>


Anonymous said...

Great news about the ALS registry.
We are saddened to hear of the loss of your friend Claudio.
We continue to keep your in our thoughts and prayers.
Much love,
The Somody's

Anonymous said...

Hello Drew, Very sad news on Claudio passing, God bless him, and now he is free from anything that can harm him ever again. My heart goes out to Cinzia,as she will miss her very special friend.It was a pleasure to meet Claudio & Cinzia. Its not long now and we will all be back in China. Hope we can cross paths, want to give you guys a hug.Love & best Jody from Aussie land.