Pella Chronicle


June 26, 2009

Help Stella keep fighting

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! 

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