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Friday, July 6, 2012

Iron Man Joins Team CMT



Shaun Daily from Quest Magazine 2008


" The difference between the impossible and the possible lie in a man's determination." -Tommy Lasorda

When I was diagnosed in 2010 with CMT, I thought I was one of the only athletes out there with CMT. That belief was re-enforced by medical professionals and the CMTA.  They only knew about Donna and then me.

What a joy it has been to find 20 athletes of all abilities around the country with CMT.  Our newest member is training for an Iron man Triathlon. Shaun has shown unbelievable toughness and determination.  I first became aware of Shaun when I read an online article about him on the MDA site.  Check out his full story at http://quest.mda.org/article/i-want-run.

Shaun has known about his CMT since he was a young child. He shares CMT with his mom and sister. As a kid he couldn't run.  His mom felt guilty for giving him CMT, but Shaun's determination to be active and his positive attitude lifted that burden from his mom.

Many years ago he was asked to participate in a relay triathlon with his leg being the swim.  He did the swim but wanted something more. He wanted to run. He searched for another athlete to help him but met with a dead end. Glad you found us now Shaun.  You are not alone.

He designed his own special orthodics with the help of a friend and his own study of anatomy and bio mechanics.  Check out the orthodics he designed to help mimic a normal running gait.


With his adapted shoes he was able to run for the first time since grade school. He wanted to show his mom so she did not have to feel guilty any longer about passing on her CMT to Shaun.  He wanted to show her in a dramatic way so he signed up to do a sprint triathlon.  During training Shaun would get choked up just thinking about crossing the finish line. I know how you feel Shaun because I still get emotional when I remember training for and then finishing the Boston Marathon.

 With only 3 months of training he ran an emotional three miles surrounded by family and friends.  Now he is training for an Ironman. What an inspiration you are Shaun! 

Shaun also shares the passion about many Team CMT members about raising awareness of CMT. He has taken what his mom thought of as a curse and turned it into a blessing, first to ease his moms guilt and secondly to educate others about CMT.  So proud to have you on Team CMT!

Shaun is married with two sons and lives in Senoia Georgia. He teaches PE and is also an avid motorcycle racer.  Shaun let us know when you run that Ironman so we can celebrate your accomplishment.


Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.


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