NeuroTalk Support Groups - Approve bill to create registry for ALS disease

Approve bill to create registry for ALS disease

Approve bill to create registry for ALS disease

To most of us the summer means backyard barbecues and taking vacations. For Americans living with the neurodegenerative disease Amyotrophic Lateral Sclerosis - ALS - the summer has another meaning. It's the time of year, when ALS became Lou Gehrig's disease.

Lou Gehrig's disease is a fatal disease that erodes a person's ability to move their muscles. As the disease progresses, many no longer are able to move their arms, walk, breathe on their own, speak or even wink an eye, yet their minds remain sharp. They are isolated and awake, alive with the knowledge that they are trapped inside their own bodies.

Unfortunately, in the 68 years since Gehrig's speech, we still do not know what causes the disease, how it can be prevented, effectively treated or cured.

We don't even know how many Americans have the disease or die from it each year.

In fact, the prognosis for a person diagnosed with Lou Gehrig's disease in the summer of 2007 is largely the same as it was for Gehrig himself nearly 70 years ago: death in an average of two to five years.

This year, the U.S. Congress has an opportunity to help our nation make progress in the fight against Lou Gehrig's disease by passing legislation - HR 2295/S. 1382 - to create a nationwide ALS registry.

The ALS Registry Act would help identify the incidence and prevalence of ALS in the United States and collect data which is urgently needed for ALS research, disease management and the development of standards of care. In short, the legislation can help us find a treatment and cure.

So as you head out to spend time with your family and friends this summer, please remember those in our community who are fighting his disease. Urge Congress to pass the ALS Registry Act!

Nancy Adkins
http://www.pantagraph.com/articles/2...ers/126866.txt