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kirsten

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Hello to everybody

On the 26th of February, a friend sent me the link to the following New York Times article

http://www.nytimes.com/2005/02/22/h...=print&position

The idea instantly came to me as I read this.

Below is the letter which I sent to the newspaper on the same day, 26/2.

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Dear Sir/Madam

My name is Fotios Tzimas and I am writing to you from Greece (to be precise, I am writing with the hands of a friend, since I can no longer use my own, and my English is not that good, anyway). I have had ALS for two years now. I was officialy diagnosed in March 2004.
In your article, Dr. Olney says that "there is not a large population of victims to agitate for research and relief", since "more than 90 percent of patients refuse it [tracheostomy] because of medical complications and greatly increased requirements of care" and die within a couple of years after the onset of the disease.
The solution would be that ALS patients stay alive as long as possible, so that they become enough to force the government and insurance companies to give money for research and new therapies.
Those that stay alive are not simply cowards that are afraid to die. If for three years all ALS patients were to choose to stay alive at any cost, a cure would have already been found long ago.
Americans, and patients from all developed countries, have the luxury of choice between life or death, and a health insurance system which will support them if they choose the former.
People in countries like my own, or, even worse, those of the third world, never get that far.
In my country, a member country of the European Union, an ALS patient has noone and nowhere to turn to. There are people who have had ALS for five or six years and still haven't been informed that they are entitled to financial support, even though the state knows that they are sick, since to approve the administration of RILUTEK, the only FDA approved drug, it(the state) requires an official diagnosis from a State Hospital. People don't even know of the existance of beds that tilt to one side or of alternative means of communication, like voice synthesizers and head mice.
Even on the Greek Internet, there is no source of information, government or other, on ALS. You will only find one private page, and that still under construction.

I am not saying all this for my own sake. In Greece even if there were 100,000 ALS patients they wouldn't be able to change anything. Nor would 100,000,000 chinese patients in China. In the US, on the contrary, they could really cause a stirrup, and thus help people in the rest of the world, too.
Your country is the main source of change on planet Earth, be that for better or worse.

Thank you very much for your time
Sincerely yours
Fotios Tzimas
460 31 Greece
[email protected]
 

Al

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Well said. If only someone would listen.
 

Carol Deboer

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May 7, 2003
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Hi there,

Yes, well said. And I agree. Unfortunately, there are so many people with ALS that have no alternatives. No treatments, care or outside funding to help them along their way with this awful ailment. Yes, we do live in a great country that , for the most part, does take care of the ill and sick. We are really lucky. I hope that you will continue to advocate for ALS and help for the paitients in your country. The world needs to hear our voices, loud and clear. More funding for research, and ultimatley for a cure. One day, hopefully, we will all be able to rejoice when a cure is found. Until then, we must fight, and bring awareness to the forefront. Keep up the good work and keep fighting.

Stay Strong,

Carol
 
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