http://www.extrahandsforals.org/la/ There is no shortage of bills before Congress and state legislatures that, depending on how they are decided, could dramatically affect people with ALS and their families. At Extra Hands for ALS we believe in speaking our mind on issues relevant to the ALS community even though we do not endorse individual politicians or parties. Whenever we feel strongly about an issue, you will find a topic summary here, and then we encourage you to use the links on the right to contact your elected officials to express your views. en-us 2008-10-03T13:28:00-06:00 http://www.extrahandsforals.org/la/archives/000744.html By Burton Bollag Congress has voted to establish the first-ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis (ALS), to be administered by the Centers for Disease Control and Prevention. The aim is to use... Key Votes Editor 2008-10-03T13:28:00-06:00 http://www.extrahandsforals.org/la/archives/000742.html The Department of Veterans Affairs on Tuesday announced that all veterans with amyotrophic lateral sclerosis, or Lou Gehrig's disease, will receive full disability, lifetime health and death benefits, a move that effectively acknowledges a general link between the condition and... Pending Legislation Editor 2008-09-25T13:03:39-06:00 http://www.extrahandsforals.org/la/archives/000729.html It's official! After more than two years of outreach to Congress, victory has been achieved in the fight to ensure access to power wheelchairs. Last week Congress voted to override the President's veto of Medicare legislation that would exclude high-end... Key Votes Editor 2008-07-27T16:03:29-06:00 http://www.extrahandsforals.org/la/archives/000639.html 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... Key Votes Editor 2007-10-18T19:09:34-06:00 http://www.extrahandsforals.org/la/archives/000587.html May 14, 2007 -- Washington, D.C. - Working to increase understanding of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, U.S. Senator Harry Reid of Nevada reintroduced legislation today to establish a single, national ALS patient registry at... Pending Legislation Editor 2007-05-17T16:23:01-06:00 http://www.extrahandsforals.org/la/archives/000537.html Stem cell research holds promise for ALS and may lead to new discoveries and possibly additional therapies for the disease. However, while stem cell research has potential for ALS, more work needs to be done before its potential can be... Key Votes Editor 2006-10-22T13:24:45-06:00 http://www.extrahandsforals.org/la/archives/000536.html A single national patient registry which collects and stores information on the prevalence and incidence of ALS does not exist in the United States today. The establishment of a national registry will help identify the incidence and prevalence of ALS... Pending Legislation Editor 2005-07-21T14:55:48-06:00 http://www.extrahandsforals.org/la/archives/000538.html ALS was included as one of just twenty-eight diseases eligible for the Peer Reviewed Medical Research Program in the 2003 fiscal year budget of the Department of Defense Appropriations bill. Researchers have submitted applications, which are currently being reviewed by... Funding for ALS Research Editor 2005-02-02T13:32:05-06:00 http://www.extrahandsforals.org/la/archives/000539.html Medicare should be reformed to meet the needs of beneficiaries with ALS by adding a prescription drug coverage plan that includes a provision for catastrophic coverage without a co-pay; that is structured in a manner that will ensure the continued... Current Legislation Editor 2004-08-22T13:55:33-06:00 http://www.extrahandsforals.org/la/archives/000540.html Individuals with ALS should be eligible for Social Security Disability immediately after they receive an ALS diagnosis by their primary neurologist rather than having to endure an assessment process that often takes a year or longer. This type of coverage... Current Legislation Editor 2004-06-15T13:56:52-06:00 http://www.extrahandsforals.org/la/archives/000528.html The NIH provides roughly three-quarters of all the funding devoted to ALS research in the United States. Thus, it is critical to continue increasing the NIH budget by 8-10% annually, specifically within the National Institute for Neurological Disorders and Stroke... Funding for ALS Research Editor 2003-09-14T12:23:24-06:00