Act offers hope for ALS patients


By By Joseph Hrezo
Saturday, August 11, 2007

To most of us, summertime means backyard barbecues, family and friends.

It's when we celebrate our nation's independence, enjoy fireworks, and take vacations to Disney or the beach.

For Americans living with the neurodegenerative disease Amyotrophic Lateral Sclerosis (ALS), the summer has another meaning.


It's the time of year, back in 1939, when Lou Gehrig delivered one of the most memorable speeches in American history, announcing to the world, "Today, I consider myself the luckiest man on the face of this Earth."
The summer -- July 4th to be exact -- is the time of year that ALS became Lou Gehrig's disease.

Lou Gehrig's disease is a fatal condition that erodes patients' ability to move their muscles.

But that does not really describe the horror of this disease. Clinical explanations don't fit either.

Have you ever had a dream in which you're completely paralyzed? You can't run or even walk. You can't move your arms or scream out or even manage to make a sound -- you're terrified -- then you wake up, relieved it was just a dream?

For thousands of Americans living with Lou Gehrig's disease, experiences like this are not dreams or nightmares. It is the reality of what their lives have become.

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, 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 U.S. 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 on vacation and spend time with your family and friends this summer, please remember Lou Gehrig and those in our community who are

fighting his disease.

We need your help. Urge Congress to pass the ALS Registry Act, and perhaps the summer will mean more than barbecues and fireworks -- it will be known as the time of year when we found a cure for ALS. To join our fight, go to www.alsa.org.