Tuesday, September 30, 2008

Take a Congressman to Lunch

I interrupt this blog to bring you a news update about ALS.

Amidst all the hysterical panic and sleezy photo-opping going on in Washington and Wall Street these past couple of weeks, Congress actually accomplished something good ... something that will help ordinary people and will even save lives.

Yes, I mean “our” Congress. The one in Washington, D.C.

No, I’m not kidding.

Congress just passed a bill that will allow for a national registry of ALS patients. Sounds like a simple thing to do ... a no-brainer, right? And not very costly. This will produce major research bang for the buck. If there is a registry of ALS patients, then researchers can begin to investigate causes and look for patterns, and thus greatly increase their knowledge of ALS.

They already know that there are some commonalities among ALS patients, because U.S. veterans have a 60% higher incidence than the population at large. This was first discovered with Gulf War vets, but research has shown that all vets from all recent wars have this same increased risk. So, clearly, something vets have experienced or been exposed to has put them at greater risk for ALS than the civilian population.

Discovering what this “something” is will be a major breakthrough ... and compiling a national registry is a giant step toward that goal.

There is a long, aggravating story about what it took to get this bill passed: It was held up by Senator Coburn of Oklahoma for reasons known only to himself (oh, he gave reasons to people, but they were so lame and inconsistent with his voting record that clearly there had to be something else behind it) and it took an enormous effort from hundreds of volunteers to get the bill passed over his objection. But it finally passed.

The second piece of good news is that the VA has finally ruled that ALS is a service-related disability. No more will veterans have to jump through hoops (difficult when you’ve got ALS) to “prove” to the U.S. government that their ALS was caused by their military service.

These are really terrific accomplishments, and our very own politicians did them. Look outside tonight ... there’s going to be a great big, beautiful, blue moon hanging there in the sky.

There is also very promising research being done on this disease in several countries, and there could be some encouraging medical news soon.

And this brings up money. (I know, you thought I’d never ask.)

Branches of the ALS Association (ALSA) are holding walks around the country to raise money for research. The ALSA of Los Angeles is holding one on Sunday, October 26 in Pasadena, and my husband, Paul, and I are forming a walk team. I don‘t plan to walk the whole two miles ... I figure about a half a block will do it for me ... but if you’d like to join our team and mill around in Central Park in Pasadena on a beautiful October day, listening to speeches, or if you'd just like to contribute to the cause, we’ll be very grateful.

Here’s a link (I hope) to the ALSA web page. Our group is called PALS FOR LIFE. (Patients with ALS are called “pals,” which is kinda cute.)


Hope the link takes you to the right place. You will have to cut and paste it in until I figure out how to "close a link" on this silly program.

I hate asking people for money, but a PALS gotta do what a PALS gotta do.

The regular blog will resume next week, or whenever I get around to it.