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Wednesday, October 19, 2016

Curing the CMT Awareness Problem

HNF bumper sticker to raise awareness

"I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." Edward Everett Hale

At the recent HNF Patient Centered CMT Summit, Rob Moore, husband of HNF CEO and founder Allison Moore gave the closing address.

He showed a video produced by the HNF where he asked a number of people if they had heard of MS, ALS and a number of diseases including CMT. Of course everyone had heard of all of the diseases except for CMT.

Moore concluded we have an awareness problem. I could not agree more. When  I was diagnosed I could not believe that over 250,000 Americans had CMT yet I had never heard of it. Many of the medical professionals I was dealing with had not heard of it either.

I agree we have a branding issue.  I know CMT is not the best name. I purpose we stop spending our energy on the name and embrace CMT,  It is what it is. ALS is not a great name either but they raised millions with their ice bucket challenge because everyone has heard of ALS.

When I founded Team CMT my primary goal was to raise awareness of CMT. I hoped people would see our Team CMT uniform, google CMT and perhaps learn about our disease. By doing media about our team members I hoped to put faces and names to this condition.

I realize many in the CMT community struggle to move, They have pain and fatigue every day.    In my talk at the summit as part of the exercise panel I shared that not everyone can be an athlete. However we each have a part to play to raise awareness.

The newest effort by the HNF will make it possible for every member of the community to raise awareness.   For a minimum $10 donation you can get a bumper sticker to place on your car to raise awareness. If you don't drive get one to give to a friend or family member. This is a simple and effective way for everyone to get involved in raising awareness.

Raising awareness of CMT is the foundation. We cannot raise money for research for a disease no one has ever heard of.  Money we need to find treatments and a cure. There is so much hope now because we have a drug for CMT 1A in clinical trials.

We also need to raise awareness so that those with CMT are diagnosed.  The more people diagnosed the more pressure there will be to develop treatments and cures.

I made a donation and my bumper sticker is on the way. I am going to ask my friends and family members to do the same.   It will be the only bumper sticker on my car and I will display it proudly.

I hope you will join me.  Follow the link to order yours
https://interland3.donorperfect.net/weblink/weblink.aspx?name=hnf&id=72


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

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 represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

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 202 members in 38 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland,Iran and Sweden. 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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