ALS Registry Act

Bill H.R. 4033 is for the establishment of an Amyotrophic Lateral Sclerosis Registry. This Bill was introduced Oct.7,2005. It has been sent to the House and currently has 213 cosponsors, the Senate S. 1353 has 49 as of 9/28/2006. This Bill is important to the ALS community in many ways. The collection of information about diseases and disorders that primarily affect motor neurons that are considered essential to furthering the study and cure of ALS.

Bill 4033 was removed at the end of the 109th session of Congress. Cong. Eliot Enger from NY who introduced the legislation in the last session is going to introduce it again to the 110th Congress. We are already lining up cosponsors to join Engel as he introduces the legislation. The attached letter that we will be filling out at the Walks does a good job of filling in the blanks.




(summary) 2007 - Waiting to be reintroduced to the 110th Congress

Earlier this year Congress passed the 2006 Health & Human Services (HHS) budget, which included $900,000 to start a nationwide ALS registry. Intended to jumpstart H.R. 4033, the amount approved was a fraction of the estimated $20 million needed to create a way to track the prevalence of ALS in the U.S. Such a registry would not only provide more accurate numbers about age, race, and gender, it would help identify environmental and genetic factors and connect patients with better targeted clinical trials. Shortly after the Center for Disease Control (CDC) was told to allocate the money, President Bush eliminated the project in his 2007 HHS budget proposal. The ALS registry act was not the only victim this time around. Bush slashed over $1.5 billion in similar programs designed to improve the health of our citizens.


the war in iraq cost 12 million dollars an hour.