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Tuesday, November 25, 2014

CMT Giving Tuesday- Match December 2nd

This article from the HNF was in my email box this afternoon and I am happy to re-post it here.
I got to meet Aoli and her mom and dad in Boston. They came to a fund raiser when I did my first Boston Marathon and they supported my Boston run.  . Team CMT exists to raise funds and awareness for people just like Aoli.  She is just as engaging as her picture and I am so glad I got to meet her. I know I am inspried by her dignity, grace and positive attitude.  I plan on giving and I hope you will too, for people like me, our Team CMT members ad Aoli.



#GivingTuesday: $10,000 Match

On December 2nd join HNF and participate in #GivingTuesday a day dedicated to giving back this holiday season. On Thanksgiving we give thanks. On Black Friday we get deals. On Cyber Monday we get online and on #GivingTuesday we give back.  The theory behind#GivingTuesday is for the world to come together for one common purpose: to celebrate generosity and donate to their favorite charity.  Please help Aoli and other children living with CMT by donating to HNF's Therapeutic Research in Accelerated Discovery (TRIAD) program. Every dollar up to $10,000 will be matched by Aoli's dad for CMT research.

Meet Aoli: #GivingTuesday Honoree

Aoli is our beautiful daughter. She is 14 years old.  When we first adopted her from China, we were told that she had clubfoot and we had her ready for surgery and treatment the first week we got home. At our very first doctors appointment, we were told that she did not have clubfoot, that her condition was neuromuscular and that it was likely that she had CMT.
I guess many people have spent years being misdiagnosed, but that was not our issue. Our issue was getting up to speed on what CMT was and what we could do about it.  Thankfully our daughter is not the shrinking violet type and isn't easily dissuaded.  From that first day when the doctors told her why her foot dropped and why she had difficulty walking, she has had the attitude that she can deal with it.  She has been completely undaunted by this challenge which has made it nearly impossible for us, as her parents, to be distraught in any way. Her positive attitude is infectious and has made it easy for us to focus on practical solutions.
Aoli is mostly focused on learning english and math and on everyday 7th grade problems.   She likes to refer to my work with the Hereditary Neuropathy Foundation as my effort to help fix her feet. She brought me to tears when she asked her 3rd grade teacher if she could speak to her class as a group so that she could explain what her condition was, why her AFO braces were not something for them to be scared of, and how she was dealing with it.  The teachers told my wife and I that Aoli's talk with the class was one of the most inspiring moments they had witnessed in their classroom.  And the other children quickly befriended my daughter and were open to her direct approach to things which was equally rewarding.
In honor of Aoli's approach to things, I ask that we all help directly face the challenge of creating therapies and a cure for CMT. We will need funds to do this and to fuel the promising research that is taking place today. We are closer now to practical solutions to address this condition than we have ever been. Please join me on #GivingTuesday to raise funds so that together we can help put an end to CMT!

Happy #GivingTuesday!
It doesn't matter how much you give
Or what you give
Only that you give

CLICK TO DONATE TODAY!
Copyright © 2014 Hereditary Neuropathy Foundation, All rights reserved.
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Our mailing address is:
Hereditary Neuropathy Foundation
432 Park Avenue South, 4th Floor
New YorkNY 10016

***************************************

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

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She has qualified to represent Team USA at the Aquathon ITU World Championship in Chicago in 2015.  

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 159 members in 30 states. We also have members in Australia, Scotland, Canada, Vietnam, Turkey, Finland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


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.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

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