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.
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.
Misty VanderWeele (Luke's Mom)
Together we can end Duchenne—together we must end Duchenne