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Monday, September 2, 2013

CMT Awareness Month

Erin Truitt and Megan Seebeck at Chicago Half Marathon

" Great people do things before they're ready.  They do things before they know they can do it. And by doing it, they're proven right."  Amy Poehler

September is CMT awareness month. For the members of Team CMT every month is awareness month.  We've grown to 131 members in 27 states, and in Australia, Canada, Finland, Vietnam, Iran and Turkey.
Just about every weekend we have a team member participating in an event.   Members have done an outstanding job at events like the Chicago Half Marathon, Boston Marathon, Marine Corp Marathon, Virginia Beach Half Marathon, Paratriathlon National Sprint Championship, Racine Half Ironman and countless other events.

The work this does is so important to raise awareness of this disease.  We have over two dozen athletes on the team with CMT. They are showing the community we can still lead full and active lives.  I see so many people now with CMT asking about exercising and I think that is do to your influence and example.

What else can we do?  Well here are a couple of thoughts;

Keep posting your pictures when you do a ride, swim event, walk, race or triathlon.  Then share those photos on your own facebook page. Let's show everyone what we are doing. It is great for raising awareness. Continue to post on the Team CMT facebook site.  It is great to see the posts, whether about a training question or to support a fellow team member.

We have lots of new members. Please send me your pictures and let me do a story about you.  It helps the other team members get to know you. We each have an interesting story. Some of us are CMT affected athletes, others are supported by friends and family members.  Besides I don't want this blog or this team to be all about me. 

Consider picking and event and put up a fund raising page. I will be running the Boston Marathon for the third time this year and I will be using the race to raise money for CMT research. It is really easy. Just contact the HNF and they will get you started. I also follow up with a fund raising letter to friends and family. I can help you with that.  I hope sometime this year you will consider picking an event and raising funds.

Thank you so much to all our team members. I love seeing your photo's and hearing about your events. I am so proud of all of you especially our CMT affected athletes. You stay active despite the challgens and I am so proud to be part of this team. 

Chris Wodke
Founder & Manager Team CMT

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 127 members in 27 states. We also have members in Canada, Vietnam, Turkey, Finland and Iran. 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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