I just sent this letter to all my Alaska government officials to get them to sign the Care Act today. I feel totally uplifted!! Thanks to PPMD's incredible website. They have made this process incredibly easy. Go to their www.endduchenne.org website and check it out. Look under tab, Speak Up.

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My name is Misty VanderWeele a born and raised Alaskan. I live and work here on the family farm in Palmer. My 16 year old son Luke, has Duchenne Muscular Dystrophy (DMD), a catastrophic muscle wasting disease that is progressive. He walked until he was 10 now uses a power wheelchair for his legs and due to the nature of the disease uses a respiratory device during sleep to assist his breathing. Not only is there no cure for DMD, my son is now unable to lift his arms for a hug. DMD is the number one lethal genetic disease of childhood and effects primarily boys, 1 in 3500 male births.

I have teamed up with Parent Project Muscular Dystrophy in advocacy efforts for finding a cure in my son's life time, including the Re-Authorization MD Care Act, which is the reason I am contacting you. I noticed not one of Alaska's representative's and senator's are on the list to support this life saving bill. And I want to change that.

Presently there are 42 boys, including my son with DMD who are registered with the Muscular Dystrophy Association here in Alaska. I urge you on their behalf and other boys across America to support them by making a commitment that you will do everything in your power to end Duchenne. Please sign the MD Care Act RE-authorization today!

Our boys in Alaska need your help! To learn more about Duchenne please watch this short 9 minute video. Or click the link below my signature for my personal advocacy web page.

http://www.youtube.com/watch?v=9U28QPHIA34


Sincerely,


Misty VanderWeele (Luke's Mom)
http://community.parentprojectmd.org/profile/MistyVanderWeele
907.232.4580
Together we can end Duchenne—together we must end Duchenne

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Comment by Misty VanderWeele on July 3, 2008 at 10:42pm
Thanks Cheryl, on my list this weekend I will be calling the parents I do know to drum up more support and urge them to jump on board. !! Thanks again.

Misty
Comment by cheryl cliff on July 3, 2008 at 9:39pm
Hi Misty-

A job well done! Thank you for doing this. Please help the others in Alaska too to send their letters in as well. The more, the merrier.

cheryl

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