To Whom It May Concern:
On Saturday, Co-Line/Goalsetter is hosting a PokerRun (motorcycle charity ride with stops in New Sharon, Searsboro, Kellogg, Newton, Reasnor, and Lynnville and BBQ)to raise funds for my daughter Stella who has Spinal Muscular Atrophy Type I. Funds will go toward the purchase of a powerchair and accessible van so we can get her out and about to enjoy the world.
Stella is 2 years and 3 months and we were told when she was one month old that she would live weeks or maybe months. With the help of a variety of equipment and good care, Stella is with us today. She is one of three living Type Is in the state of Iowa. Spinal Muscualr Atrophy (SMA) is the leading genetic killer of children under age 2 but the closest neuromuscular disease to a cure. We attended the international conference for SMA last weekend and while it's very exciting that a new drug trial and stem cell trial offer potential for a cure for this devastating disease, the only holdup is funding. We are in the process of begging our legislators to sign the SMA Treatment Acceleration Act. With a little help, SMA would be cured and according to researchers, it will open the doors to cures for ALS (Lou Gehrigs Disease), Parkinsons, and spinal cord injury.
If you helped with contacting senate/house members last year to help get the SMA Treatment Acceleration Act passed, thank you!! The SMA community made HUGE progress in getting 85 of the House and 21 of the Senate to cosponsor the bill but unfortunately it expired before it was successful . . . so we have to start all over again in hopes of getting it passed in 2009! Please help us ACCELERATE the cure for SMA. Research has figured out exactly what causes SMA (unfortunately this is NOT the case for many other diseases), so now it?s time to finish a cure for SMA! SMA is the neuromuscular disease closest to a cure and it will only take you 5 minutes to help us!
Calling all members of the SMA community to urge Congress to support the SMA Treatment Acceleration Act!
Legislation that dedicates federal funds to find treatments, and possibly a cure, for spinal muscular atrophy has been reintroduced in Congress. The SMA Treatment Acceleration Act (H.R. 2149, S. 1158) has bipartisan support, but we again need your help to move this bill forward. MDA now has an online tool at www.mda.org/advocacy that makes it even easier to send an e-mail to your elected officials and let your voice be heard. Please share this information with your friends, family, neighbors and co-workers and ask them to S Take 5! Together, we will win the fight against SMA!
--Go to http://www.mda.org/advocacy/bills.html
--Click on each of the links for the SMA Treatment Acceleration Act: HR 2149 (which is for the House of Representatives) and S1158 (Senate).
--Look for the "Take Action Now" and enter your zip code and hit "go". This will give you your representatives and the sample letter that has been drafted. Feel free to include any personal information about how SMA has affected your life or that you know someone like Stella who has SMA.
We need all the help we can get to get the word out about these exciting discoveries. As a family, our goal is to help newly diagnosed families understand that there are ways to give their children quality life instead of just being told "take them home and love them." Stella's website has received almost 200,000 hits: www.caringbridge.org/visit/stellaturnbullturnbull
Thank you for your good work,
Mommy to Treyton (4 and SMA-free), Stella (2 and SMA Type I), and Sayer (8 months and SMA Free)
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