Senator Tom Coburn Please Come

Senator Tom Coburn has successfully blocked the ALS Registry Legislation that passed the House by an overwhelming margin and enjoys rare bipartisan co-sponsorship by 74 of his Senate colleagues. It is hard to believe that one individual can hold this legislation hostage but it is true. It sure should scare all citizens that this can be so.

Over 500 ALS patients will attend the ALS Association National Advocacy and Public Policy Conference in Washington, D.C., next week where most of them will visit their Congressional legislations. While in Washington all of the conference attendees will band together in a candle light ceremony to remember the 5600 that died from ALS since the conference only a year ago.

Actually since there is no credible documentation of how many have ALS or die each year, the 5600 is a guesstimate that apparently has remained unchanged and unchallenged for the past decade. That is the whole purpose of the legislation, to build a credible database by which to evaluate the true prevalence of the disease and provide data that can direct research to help find the cause and a cure.

Why is a registry needed asks the good Senator Coburn? Without reliable data it is likely that direction of research and allocation of research funds will likely allow the absence of a diagnostic test, ignorance of the cause, and the failure to find meaningful therapies, much less a cure, will continue to be the status quo.

Somehow that status quo speaks ill of the will of a nation that can put astronauts in space on a regular and frequent basis. Or a nation who's pharmaceutical companies can spend billions on advertising rather than the research needed to address "orphan" diseases like ALS.

Shown above is a notice that has been posted by one of those who lost a loved one to this disease for which there are no effective therapies and no cure. It is a disease that ends up with a mind that is left intact in a body that is completely paralyzed. Maybe Senator Coburn missed these sessions in his purported medical training. No matter, because he is being invited to attend this commemorative candle light ceremony at the World War II Memorial on the Capitol Mall.

I wonder if he will have the courage to face those suffering from the disease and the many more who have lost loved ones. If he doesn't maybe some of these brave souls will hold a ceremony in front of his office in the Senate Office Building.

I think it is ironic knowing the Senator's one man log jam to view the warm image shown on his website.Think Different