Meeting w/ Senator Mikulski

Thur we will be meeting with Senator Barbara Mikulski (D) and her HELP commitee in DC to talk about our experience with Spinal Muscular Atrophy (SMA). The meeting has been arranged by FightSMA and is important in the fight for an SMA Act to be authored and passed.

Hopefully our story, along with others, will get this thing going so our government will start funding research for a cure for SMA, the #1 genetic killer of kids under the age of two.

Medical advances have been made possible through the funding of private organizations like FSMA, FightSMA, and others, but more funding is needed if we're going to beat SMA, which also happens to be one of the most, if not the most, cureable of the known neuromuscular diseases.

Please join us in praying that this Act will be established and urging your government to establish an SMA Act.

Peace <><
Sent via BlackBerry by AT&T


Christy said…
Will definitely be praying for you all tomorrow. Thanks for keeping us posted!
Anonymous said…
Good luck, guys! Very exciting stuff, and I know you'll do great. I'm sure you're bringing lots of pictures???

Sue O
Tricia said…
Praying for you!!!

Sky said…
I cant wait to hear how it went, we are have 2 of our Senators to the house to meet Sky and the family, one of them (Inslee) needs to meet someone with SMA before he will sign the bill, and (Haugen) is all for the bill to pass, but wants to meet Sky and hear our story. anyways I hope your meeting went great! Lots of Prayers always for all of you!!!!
Christy said…
How did it go? I hope it went well!