Race Schedule and Results

Thursday, September 27, 2012

Awareness


Sometimes we just meet someone who strikes a certain chord with us.  Maybe they have a special talent, or a special personality, or there's just something that stands out.  And we want to help them.  Maybe because their heart is so amazingly big.  This is a little story about that.

Everyone knows I'm a member of Team Rev3.  We're an awesome group of athletes if I may say so myself, but we all seem to have big hearts.  We want to help where we can.  We have partnered with the Ulman Fund and that's kind of like our team's little baby.

But back in maybe August, one of our teammates reached out, telling us about a lady named Donna.  I don't know Donna personally, but her story and her amazingly big heart struck a chord with me.

Donna has a nerve disorder called Charcot Marie Tooth disease.  What, you haven't heard of it?  Yeah, I hadn't either.  But, CMT is the most common nerve disorders out there.  Donna shared a little bit of her story with us, let us know that September is is CMT Awareness Month and asked if we could help get the word out.

We are Team Rev3.  ABSOLUTELY.

Here's a little about the disease:
  • It affects nearly 1 in 2500 people
  • It's not usually a deadly disease
  • People with CMT have difficulty transmitting signals to their muscles because of genetic problems, resulting in muscle atrophy of the feet and hands and then progressing over time throughout the core
  • Some people impacted by CMT are in wheel chairs, some in legs braces, and then there are people like Donna who appear "perfectly normal" 
Donna told us a little about what the day in the life of someone with CMT is like... there's the not knowing what your future will be like in terms of mobility, there's the uncertainty of knowing how fast your disease is going to progress, there's hope for a cure, there's knowing that you have a disease that appears invisible to some,  there's the fatigue that comes with it, and there's the desire to go fast, but knowing you can't because of faulty nerves.

Donna sent us all shirts from the CMTA which is the sole single focus organization actively supporting the search for a cure for CMT.  They currently fund over 50 different research initiatives in the search for a cure for CMT.



For Donna, and all of the people out there suffering with CMT, I hope that September has brought awareness to people throughout the world who don't know what the disease is.  I hope that science brings hope for a cure.  I hope you know how amazing you all are!

To learn more about CMT, visit their website.

1 comment:

Matthew Smith said...

Thanks for the education on CMT. I had never heard of it. Cool shirt!

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