Monday, November 1, 2010

Have you met Getty?

If you have noticed my blog lately you can see that I've streamlined the layout a little bit.  I've left up the necessary things and the items I feel are important.  If you look to the right of this blog post and see a button that says "Getty Owl, helping Baby Getty" I'd like for you to click on it after you're finished reading this post.  I want to you to not only read the blog but look up at the top and click on What is SMA and read it.  I did and I've decided to do something about it...or at least help.  I don't remember how I came to know about Getty's blog  (maybe I was drawn to the owl) but I do know that I keep up with it regularly and the strength of Getty and her parents never ceases to amaze me.  They recently got to go on a small vacation and sweet Getty, 7 mths, almost kicked her parents out of the hotel bed (read their latest post).  Getty's mom, Kate, introducded me to Sophia's parents.  Sophia's parents are raising money for the research of SMA1 (Spinal Muscular Atrophy) because Sophia, 20 mths, also has SMA1. 
Anyway, most of you know I have been saying for MONTHS that i was going to carve out some Mommy time, that I was going to get back into shape and that I was going to get back into running.  Well, as usual, life gets in the tends to do that when you have a baby (NOT COMPLAINING).  I decided that if I were going to reach my goals then I needed to have a reason to reach them.  Something I felt was bigger and more important then my selfish reasons.  After reading that you could say, isn't staying healthy for Teagan a good enough reason? Yes, it is.  I am healthy. I can run around after her, I can carry her for hours and I take care of any need she has.  Teagan is also, Thank God, healthy. Getty is not. Sophia is not.  Babies with SMA1 are not.  And there is no cure.  Yet.
So, this is my challenge.  This is the thing I needed to light a fire under my rear end.  I am going to run for Getty and Sophia.  I want to help raise awareness for SMA1.  Josh and I have discussed wanting Teagan to know from an early age how important it is to help people.  How is she to learn that if we don't provide an example for her to follow?
My goal is to raise $1,000 by December 10th, obviously more would be great.  I will be racing a half marathon on December 12th.  Training is going to be difficult because
a) Teagan is still nursing and so I have to be back from my runs no later then 7:45pm in the evening.  Also, on the weekends I will have to schedule my runs around her eating schedule (I don't make enough extra for her to bottle feed during the weekends).
b) Running a half marathon is HARD. There is no question that the training is going to be grueling.

Even if I get to the race and I'm not completely ready I have already decide I will go through with it.  If I have to walk/run for 13.1 miles then so be it.  I will cross the finish line with my head held high. 

So, if you would like to donate to this cause I have set up an account on Crowdrise .  If you don't feel comfortable giving money online then you can contact me at and we can figure out something. 

Here are some facts about SMA Kate sent me:

SMA is the #1 genetic killer of young children.
SMA is estimated to occur in nearly 1 out of every 6,000 births.
1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.
The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.
If you would like to know more about SMA1 here are some websites Kate suggested to me:
Families of SMA
Fight SMA