What do you consider newsworthy these days?
By Jeff Faull
Friday, February 6, 2009 10:34 AM CST
Today as I sat eating lunch I listened yet again to the aftermath Michael Phelp’s actions would have on society. I then heard discussions of the woman who decided to endanger herself as well as eight fetuses. I then heard of Christian Bale’s anger issues and how the claws came out on American Idol. As each one played I was slightly more disgusted.
I feel I have to explain myself to some degree. To be perfectly blunt, I’m dying. I will be 41 years old this March and if I followed the statistics that would more than likely be my last birthday. Luckily, I have no intention of following the statistics.
Two years ago I was diagnosed with amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s disease. ALS is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without the use of a ventilator. Most people with ALS die from respiratory failure, usually within three-to-five years from the onset of symptoms.
So what does that have to do with the “news” mentioned above? Let me share with you. I’m willing to bet — not much in this economy — that the majority of people who read this have never heard of ALS or have heard of it but know nothing about the disease. That is the rub. There are an estimated 30,000 to 40,000 people with ALS also known as pALS in the United States. A pALS loses the fight every 90 minutes and an even more frightening statistic is that someone else is diagnosed to take their place just as quickly. ALS was first described over 140 years ago but there is no known cause, no cure and not even an effective treatment. Veterans have been shown to be twice as likely to develop ALS as the general population and also develop symptoms at a much younger age.
We in the ALS community have been begging for coverage to help us raise awareness about ALS. We’ve had letter campaigns to television outlets. We’ve written letters to the editor of almost every paper you can imagine. We’ve pitched story ideas to producers. Last year a pALS and a friend of mine rode his power wheelchair from Florida to Washington, D.C. and got nothing more than a couple of spots on the local news. We’ve done just about everything we can think of to try and get the word out and more often than not we are turned down.
I get it. Celebrities are newsworthy and who am I? I’m just a graduate of Mifflinburg High School, a veteran and a father of two beautiful teenage girls. I have had the honor of testifying to Congress, the privilege of standing on the Mobile Launch Platform within a couple feet of the space shuttle at Kennedy Space Center and I’ve been given a diagnosis of ALS. Because of my diagnosis I have met some of the most incredible human beings the world has to offer who also happen to be pALS. I just wish the rest of the world would stop worrying about the celebrities long enough to see what I have.
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