Friday, August 23, 2013

That SMA thing I run for.




I have failed miserably this month.  To be honest, I'm losing steam as far as inspiration goes right now but that is not a viable excuse.  This month called August also happens to have an "AKA" and it's SMA Awareness month.
I have been training for my very first marathon.  I have been training to raise money to help kick SMA in the YKW (you know what).  The money that goes to Getty Owl Foundation is used to aid Dr. Brian Kaspar at Nationwide Children's hospital to potentially cure SMA. I have not done a very good job of telling you guys about what it is, how it works, and the fact there is currently no cure.  So, here goes...

SMA (spinal muscular atrophy) has 5 "types".  0-4.
*0 being the most severe, where the onset is before birth and the sweet baby isn't estimated to live more than 6 months.
*1- is a close runner up as far as the most severe form of SMA goes.  These sweet babes cannot sit up without support.  Breathing, moving, and swallowing are difficult.  A simple cold can exacerbate the difficulties and can potentially cause death if not handled appropriately.  The average lifespan of children with SMA type 1 is barely 2 years.  However, with your help we can increase this number.  And as a sweet reality to this fact, sweet Getty will be FOUR in March....just saying.
*2- people with type 2 are able to sit but not stand.  Those diagnosed with type 2 have an estimated lifespan that can go into adulthood.
*3-those diagnosed with type 3 can walk but this ability is lost over time because you caught that "atrophy part" right?
*4- those diagnosed with type 4 are extremely weak but can walk and should not lose that ability over time.

Let's talk genes.  Something I don't know a whole lot about and maybe you don't either.  That's why this handy-dandy diagram is dummy proof....


Thing about this carrier thing is it's not in the regular work up as far as prenatal blood work goes.  It's foolish seeing as SMA:
is the #1 genetic killer of young children
occurs in nearly one out of every 6,000 births (and this number seems to be on the incline)
is NOT based on race, ethnicity, or gender

All that being said.  We NEED to find a cure.  Soon. Quickly. Rapidly. Allegro. Yesterday.
My race is November 16.  I am collecting money either in person or online via Crowdrise.
ALL the proceeds go towards Getty Owl Foundation which is a 501c-3 organization.  This means it's TAX DEDUCTIBLE people.
My goal is $1200 because seriously, it's SMA and I'm running a MARATHON.
That would be 26.2 miles guys. 26.2.....

In all seriousness though, please think about donating to this cause whether it's through my Crowdrise site or directly to the Getty Owl Foundation.  We've gotta get on this y'all.  We just gotta.




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