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Discussion:
new bill in dc for funding
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there has been a bill introduced into congress for more funding for sma research and treatments. i have letters requesting that your local representative and senators support this bill that i can email to anyone interested in sending them to help the cause. send me a message with your email and i will forward them to you. i have them in microsoft works format.
Posted on 09/01/07, 10:33 am
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Comment:
Email me when others reply to this topic help
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Reply #1 - 09/03/07  11:11am
" I would love to have a copy of those letters to send to our representatives here in North Carolina. thank you "
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Reply #2 - 10/20/07  1:45pm
" Please send them to me also. I'm in Missouri. Please send to DonnaJR@aol.com. Thanks! "
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Reply #3 - 07/28/08  2:46pm
" GO HERE AND SIGN THE PETITION..

http://www.petitiontocuresma.com

I ALREADY SIGNED I HOPE U ALL WILL TOO.

MELISSA "
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Reply #4 - 08/08/08  11:18am
" I to have signed the bill. If you look under families of SMA children you will see petition online. Our goal is now 50,000 signatures and we can do it!!
I am a grandmother of a SMA type 1 baby who is now 6 months old.
Lorelei will need a G tube for feeding put in this month. She has still some movement in her arms,hands and can wiggle her feet. What is a concern to us is her breathing. We are going to be getting a suction machine soon to help her sleep at night.
God bless us all and give us all courage in these hard times. "
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Reply #5 - 10/28/08  9:16pm
" please add me to your list "

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