THE PEOPLE SPEAK: Registry would help diagnose ALS sufferers
 

THE PEOPLE SPEAK: Registry would help diagnose ALS sufferers




I have ALS, better known as Lou Gehrig’s disease. I can no longer work or walk, and my family and I are faced with some life-changing questions.

However, I have not written for you to feel sorry for me.

In the fall of 2007, Senate Bill 1382 was presented by U.S. Sen. Harry Reid to develop a system that could collect information to establish a national registry for ALS. The purpose would have been to better describe the incidence and prevalence of ALS, examine the appropriate factors and also to include demographic factors such as race, age, gender and family history. A similar bill passed the House, 441 yes votes, 4 nays and 17 not voting.

The bill has 76 co-sponsors in the Senate.

Sen. Tom Coburn, a medical doctor from Oklahoma, has single-handedly blocked this bill. This hold tactic is a callous, selfish act that will personally affect me and thousands of ALS patients who will eventually become paralyzed and die of suffocation from this horrible disease.

Please join me in protest of Coburn. Call his office at (202) 224-5754. Let him know this hold must be lifted.

Research is being done, but without data to support the studies, a cure may never be found.

The number of people with ALS is only a guess. Many are misdiagnosed or never diagnosed due to a quick death.

ALS is very hard to diagnose, but with a registry we might be able to find common factors and eventually a link to so many unanswered questions about this disabling disease.

You would think as a medical doctor, Coburn would be more compassionate for those of us and our families who are suffering from this destructive disease.

Sherry Owens

Sulphur

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