Wednesday, September 17, 2008

The Ravages of ALS

Of Baseball Players and Cousins Once Removed

A Big Man for America’s Pass-time: Lou Gehrig? Most sports fans remember the name but can’t quite put their finger on the man or the sport. Lou was a scholar first. He attended Columbia University in downtown New York on a football scholarship while majoring in Engineering. And he was a big student – a whisper over 6 feet tall and weighing in at 200 lbs. The Iron Horse, as he was known, was a native New Yorker, born 105 years ago. He batted and threw left handed and signed with the Yankees as a free agent, batting .423 his first season and .500 his second. Over the next 17 seasons he averaged .340. But Lou got sick. His body was ravaged by Amyotrophic lateral sclerosis, commonly referred to as ALS or Lou Gehrig’s disease. During his farewell speech Lou Gehrig was quoted as saying, “…I’m the luckiest man on the face of the earth.” Maybe ALS comes with a positive attitude.

Uncle Pete and Cousin Chipper: One of my uncles, Pete by name, returned from World War II and married a girl from New York. They had a son about my age whom they named Pete also, but instead of calling him Junior or Sonny, they called him Chipper. Chipper is a brilliant businessman who was a childhood prodigy as a pianist but chose the business world as an adult. He had a son whom he named Brian. Brian, like Lou Gehrig, was handsome, smart, and athletic. He chose Virginia Tech for his college, married sweetheart Jameela, and had a couple of kids. Then, like Lou Gehrig, he contracted ALS. And like Lou Gehrig, he considers himself the luckiest man on the face of the earth. He and Jameela have maintained such a positive outlook despite the hand ALS dealt Brian. Brian is receiving the best medical care and he and Jameela write a blog diary at If you’ve never heard of CaringBridge you need to take a look at the blog and their site.

Now is the time to act against ALS: I received an email forward today from Jameela in which she asked me to help with some legislation regarding ALS. The email follows:
Let's Pass the ALS Registry Act

Dear Jameela,

With just a few weeks remaining before Congress adjourns for the fall elections, the time has come for the Senate to vote on S. 3297 and pass the ALS Registry Act. We anticipate that the Senate may hold a series of votes on S. 3297 at any time from now until the end of the month so it is absolutely critical that you reach out to your Senators TODAY. This may be our last chance to pass the ALS Registry Act this year and take the next steps in creating a national ALS patient registry.

Thanks to your continued outreach, we are now just five votes short of the 60 we need to pass S. 3297! So please go to the Advocacy Action Center of our website and tell your Senators not to leave town until they pass this critical legislation. Let them know that people with ALS cannot afford to wait until next year. Let them know that politics should not come before patients' lives and that arguments that it costs too much are just excuses (the bill is an authorization and does not appropriate a single dollar!). And let them know you will be watching how they vote. Let's finish the job and enact the ALS Registry Act this year!

In addition to grassroots efforts, The ALS Association also has engaged in other advocacy efforts here in Washington. We helped to organize a coalition of more than 140 different organizations who recently sent a letter to the Senate in support of S. 3297. Moreover, Oprah Winfrey has helped generate support for S. 3297 during her daytime talk show by requesting viewers urge Congress to support one of the bills included in S. 3297. These combined efforts, along with your grassroots outreach, are sending a loud and clear message that hundreds of organizations representing millions of Americans are in this fight together. We want the Senate to pass S. 3297 this year. So again, please contact the Senate today!

Finally, as you reach out to the Senate, we also want to emphasize how important it is for you to support S. 3297 and not advocate for the ALS Registry Act to be considered as a separate piece of legislation. Our supporters in the Senate have included the ALS Registry Act as part of S. 3297 in order to pass the bill this year. And it likely is the only way this can be accomplished, for there simply is not enough time remaining in this year's session to pass the ALS Registry Act as a stand-alone bill. In fact, if we do not unite behind S. 3297, Senator Tom Coburn will succeed in his more than two year quest to kill the ALS Registry Act. We can't let that happen. People with ALS can't afford to wait any longer.
Contact your Senators TODAY!

If you have any questions or would like assistance reaching out to your Senators, please contact the Advocacy Department at

I encourage every reader of my blog to contact a senator regarding this legislation.

A little blogging music Maestro... Any song from the album “Faith and Courage” by Sinead O’Conner.

Dr. Forgot

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ALS/NY said...

Great post. Thanks for helping to spread the word about ALS and the need for better legislation.

ALS/NY said...

Great post. Thanks for helping to spread awareness about ALS and much needed lesiglation.