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.

 

Marathon.

So, it's happening.  I'm officially training for my first marathon.  Right now I don't have a job and I have a lot of down time on my hands.  So instead of sitting around and doing nothing and getting more depressed during the time I'm looking for a job I decided it's time to finally run a marathon.
I am following the Hal Higdon's 18 week Novice plan.  I decided to start off with the beginners so that I reduce the possibility of injury.  My marathon is in 25 weeks but the training suggests a taper so it should work well.
I am not only running to kill time and get healthy.  I am also running to raise money to find a cure and awareness about SMA.
I've written about sweet Getty, one of Teagan's two pen pals once or twice (okay, more, but those are some more informative ones).  When I ran the half marathon I ran and raised over $600 for the Getty Owl Foundation.  My goal for the marathon is to double that.  If you'd like to donate you can do so here.
I will be talking about my progress on here occasionally. Different experiences with gear and runs and gels and all that goes along with training.  I'm looking and desperately needing new shoes, I am looking at watches, and a new knee brace (stupid IT band).  I'll keep you posted on those things as the time comes for them.
I will also be putting together a sponsorship package.  If you have a company that you would like to get some social media attention and a spot on my marathon shirt (it's a boston qualifier) then keep looking back here for more information.

Need art for your home?

How about this piece?

The Getty Owl Foundation is having an online art auction. The auction starts on Tuesday, August 23rd until they run out of art which will probably be around August 30th.

All the art sold is either made by a child with SMA or a loving parent of an SMA child.

100% of the money raised is going to the Getty Owl Foundation for the gene therapy program at Nationwide Children's Hospital in Columbus, Ohio.

The starting bid of all of the art is $10

2 pieces of art will be up for auction each day.

This piece of art was made by a little girl name Nora.  Nora has SMA Type 1.  She is a little fighting firecracker though who apparently has a nack for painting! Isn't her "Abstract Minnie" piece fantastic?

Lullabies for Getty

Teagan and I have had the honor of calling Getty and her mom friends for a little while now.  We have never met in person but hopefully one day we will.  We have grown closer via the internet/e-mail then some people grow face to face.  I am already forever thankful for their friendship and can´t wait for the day Teagan & Getty dress up in their tutus and party.  When we got the good news about an album coming out that would help raise money for the official Getty Owl Foundation we jumped on the chance we were given to tell people about it.

The album is Sweet Water Child--Lullabies for Getty by the Damnwells.  Tuesday, April 5th (tomorrow) is the official drop date of the album.  The idea is to skyrocket this album so it shows up on the big Itunes kids charts because the more people that buy the album the more money goes to the Getty Owl Foundation.  The Getty Owl Foundation is raising money for SMA (Spinal Muscular Atrophy) research.  The cure is so close and is within arms reach as long as the researchers have enough money to keep researching.

So, if you can help us out and buy the album tomorrow all of the SMA warriors would appreciate it (I have recently been bestowed the honor of being called a SMA warrior and I wear the badge proudly).

For those of you who don´t know about SMA here are some facts about it (taken from Gettyś blog).  And don´t worry I had never heard of SMA until I happened upon Getty Owlś blog. 

Spinal Muscular Atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness. Infants, like Getty, with SMA Type 1 (SMA1), the most severe type of SMA, are born with very little muscle tone and weak muscles. They develop feeding and breathing problems as the weakness gets worse over time. The weakness eventually becomes severe.

There is no cure or treatment for SMA. The lifespan with SMA1 is seldom longer than 2 – 3 years.

• 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.
• SMA does not affect the mind.
  Spinal Muscular Atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness. Infants, like Getty, with SMA Type 1 (SMA1), the most severe type of SMA, are born with very little muscle tone and weak muscles. They develop feeding and breathing problems as the weakness gets worse over time. The weakness eventually becomes severe.
  There is no cure or treatment for SMA. The lifespan with SMA1 is seldom longer than 2 – 3 years.
• 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.
• SMA does not affect the mind.

We are guest blogging over at Getty Owls blog today.  Why don't you check it out?

Getting to know Getty Owl.

Over the last few months Getty and Teagan have been getting to know each other.  Getty's mom, Kate, and I have been doing the same.  Let me just tell you that I have grown to love this family already.
Teagan asked me a week or so ago if she could ask Getty some questions and have me type them up and put them on the blog.  She wanted to know some different things about Getty but she really wanted other people to know more about her new friend.  Teagan wanted to write a little something herself.  So, without further ramblings from her mom here is Teagan in her first blogging debut.

Hi bloggy world!

I'm Teagan.  The one my mom tends to talk about a LOT on here.  My mom "met" Getty and her family first and introduced me.  Now Getty and I are friends.  My friend Getty has a disease called SMA (Spinal Muscular Atrophy) which is what she is "known" for around the internet.  I don't really think about that part when I think about my friend.  I think about, well, my friend Getty.  I wanted you all to get to know her too.  So, I asked my mom to type up some of my questions and Getty's mom and dad helped her answer them.  Neat questions like her favorite color and why she is called Getty "Owl".  Also some kind of important questions about SMA and what it's really like. One of these days I hope to get to see Getty in person.  I bet we'll both be wearing tutus and cuddling up with our stuffed animal owls while watching a funny cartoon together.  Because you see I love owls too.  That might be another reason why we're such good friends!
Well, I'll let you read the questions I asked and the answer she gave now.  Goodnight bloggy world!

Love,
Teagan

1) Why do your mommy and daddy call you Getty "Owl"? Because when I was born, mommy thought I had a wise old soul. I didn't fuss, I didn't complain, I was happy to be here. Mommy and Daddy taught me how to "hoot" when I was two weeks old and I have been hooting ever since. I have have big blue eyes like an owl. 
2) What is your favorite color? Blue, like my eyes.
3) How many owls do you have? I have over fifty friend owls in my room. We talk all the time.
4) What is your favorite book? Mother Goose Nursery Rhymes, my mommy reads it to me every night.
5) What is your favorite thing to do with your mommy? We like to talk about all kinds of stuff.
6) What is your favorite thing to do with your daddy? We like to sing together. Daddy sings me songs all the time.
7) What is SMA? It is something I was diagnosed with when I was even smaller than I am now and it keeps my muscles from getting strong. But it also means I get lots of extra special love and attention from my mommy and daddy.
8) How do you eat exactly? Can you taste stuff? I get to eat through a tube in my tummy. Mommy let's me suck on fruit once in awhile and I like that.
9) How do you take a bath? Mommy and I take baths together. She holds me while I get to move my arms and legs around. I like when mommy moves me back and forth in the water, I feel like I am swimming.
10) What is your "brother" like? Cooper is always around making sure I am safe and happy. He licks my face all the time and it makes me giggle. He also likes to cuddle with me.
11) Do you have a favorite doctor? Dr. Givant, she is silly and she always makes noises with me.
12) Are you scared when you have to go to the hospital? No, not at all. All the doctors give me lots of attention and they take good care of me.
13) What kind of music do you like? I enjoy when mommy and daddy sing to me and I also like Edith Piaf. I don't know what she is singing about because it is french, but I always sing with her.
14) What do you want people to know about SMA? I want people to know that with enough money for research, it can be cured.  Even though I have SMA, I am a happy girl that loves to live every day right next to my mommy and daddy.

We are TEAM GETTY!

We were TEAM GETTY before but we are official now!

We sport our TEAM GETTY bands everyday! (Teagan's is on my key chain for safe keeping). 
Look for Teagan's first blogging debut soon...she asked to interview Getty and Getty said okay! We are so very excited!

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 way...it 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 RiciReid@gmail.com 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