Wednesday, May 6, 2009

Future Advocates: From the mouth of KIDS.

Next week in our nation's capital there will be a large group of amazing people gathering to advocate for ALS. Some of those advocates will be bringing letters from PALS (People with ALS) and Caregivers who aren't able to attend. All voices need to be heard and counted. Even the voices of the children who's lives have been affected by this wicked disease. The following letters are from two children (names are not shared) who have lived under the shadow of ALS their entires lives.

Dear Seniter,
My name is J. I am almost 11 years old. I am writing to tell you my personal ALS story, so that you don't view us as numbers. We are the face of ALS. Right now, there are about 30,000 faces with ALS. My granma died from ALS. She had the diesease for almost two years. When she died she was only 45 pounds! My grampa took good care of her. He also took care of his five kids and his big farm. When my granma couldn't talk, she had to use a Magnet Doodle, which is a baby's toy! My grampa didn't know of another way to talk to her. My granma had cousins who also died from ALS. My granma was a good person. Even though I didn't know her, I know she was a special person. I don't want any other of my family to get ALS. I know kid's in my school who have family members who have ALS right now. I'm afraid my mom will get ALS. She is only 33 but I know she can still get the diesease. We need you to help us get more money for research to find a cure. I know the govament gives lots of money for the flue but more people die from ALS than from the flue. Can you please help the faces of ALS?

Sinceraly: J.F.

Dear Senater,
My name is G. and I just turned 12. I'm in 6th grade and science is my favorite subject. I am writing to tell you about ALS. It is a terrible disease and it killed my Grandma Jane. She was only 45 pounds when she died and I did not even get to know her. I was only 1 years old when she died. Do you know there are 30,000 people with ALS in America right now? Did you know that someone with ALS dies every 90 minutes? 20% of all cases are genetic. I lost my Grandma and three other family members to ALS. I do NOT want my mom to get it, or my sisters. I don't want anyone in my family to get this disease ever again! I am asking you to help us get more funds for research. It is like a helping hand to the scientists who work day and night to find a cure. It is hope for people who have ALS.
Very respectfully,

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