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Wednesday, September 3, 2014

My Passion

My Passion

I alone cannot change the world, but I can cast a stone across the water to create many ripples.”- Mother Tersesa

I’ve promised myself to do something every day this month to raise awareness for CMT. 
In yesterday’s blog I wrote about the #Unselfies4CMT Text-to-Give campaign.   In case you missed the blog here is the link that explains it all.

You can donate via cell phone, download the UnSelfies flyer and post a picture just like I did. Then of course I shared it on Facebook and challenged three people to do the same.  I hope you will do the same.  Let’s make this as viral as the ALS campaign.

As you can see by my photo, my passion is raising awareness for CMT. I couldn’t believe when I was diagnosed that I’d never heard of Charcot-Marie-Tooth or CMT.  I would experience that over and over again as I told people about my condition. Seems most had not heard of CMT, including many of the medical professionals I talked with.

I have lots of passions: racing, running, swimming, biking, writing, skiing, etc.   I’ve used most of those passions for my greatest passion, raising awareness of CMT.   I think raising awareness is the first step to treatments and a cure. Research and programs cost money. It is difficult to raise money for a condition no one has ever heard about. I think one of the reasons the ALS ice bucket challenge was so successful was that everyone has heard of ALS and has an idea of what it is. The other part of the challenge that helped was calling someone out to participate and using social media.

Sharing our passion, using social media and getting others involved will make this challenge successful for us as well. Will you sit on the sidelines or will you participate?

Because raising awareness of CMT is my passion,  I started Team CMT, set a goal to run the Boston Marathon and wrote a book about my experience. I’ve spent countless hours and dollars promoting the cause and CMT awareness. I don’t do it for attention. I don’t really like being center stage. I do it because I feel called to do it. I feel very blessed to be so active and I wanted to share my gifts to make a difference, even if it is a small difference.

 I got involved because I know I am one of the lucky ones. My mom always used to quote the Bible verse; “To whom much is given, much is expected.”  Maybe no one else expected it of me, but I expected it from myself. I think God gave me these talents to benefit others.  Anyone that suggests otherwise does not really know me.

I’ve always said the world is divided into sitters and doers. I’ve made the choice to be a doer. I hope you will join me. It’s ok to be a sitter.  Sometimes the time is not right or the cause does not fit your passion. Sometimes with CMT you may not have the energy or even the funds to help.

Often sitters are quiet cheerleaders for the rest of us. What I find that sometimes happens in the CMT community is some sitters throw stones at the efforts of others. They do nothing to help raise awareness or funds, but are quick to criticize those that step forward.  I had that happen just a few days ago.

I posted a video about Team CMT to kick off awareness week.  Mary, a woman in one of the CMT Facebook groups said she would not share it because it was a slap in the face to people with CMT.  The disturbing part was that five others liked the post. She directly attacked my effort and others cheered her on.  
She did not like the video because it was too upbeat and downplayed CMT. The text came right from the CMTA site.  We have 46 CMT affected member of Team CMT. For us being active and sharing our passion for sports to raise awareness is a very real part of our CMT experience. We all realize we are the lucky ones.  We are fully aware that most with CMT cannot do what we do. We run, bike, swim and walk for them.  We use our talents to give back to the CMT community.

It is ok to be on the sidelines, but I don’t think it is ever ok to throw stones at the efforts of others trying to raise awareness.  Let others use their passions in a way they see fit. Who are you to judge? Who are you to strike out at someone else out of your pain and frustration?

I’ve seen it happen to others, it has happened to me more than once.  I’ve been called a fraud and an elitist and even threatened with being slapped, all by members of the CMT community. I’ve been told because I help the HNF I stand in the way of a cure.

 I’m trying to help. Don’t be one of those people. That negativity is contagious. Those types of actions may stifle someone from stepping forward. If you cannot support an effort or join in, then don’t attack our honest efforts to help.

We need to support those in the CMT community that are using their passions to raise awareness and funds for CMT awareness. It should not matter whether they work for the CMTA, HNF or MDA.  You may not share our passion or vision, but please don’t denigrate and criticize those of us trying to help.

What should count is their passion and efforts to support a cause so important for all of us that are affected by CMT and for our affected friends and family members.  Raising awareness, using our passions, supporting those affected with CMT……all ripples in the pond that will lead to recognition, treatments and a cure.

Author representing Team USA PATCO Dallas 2014

Chris Wodke
Founder & Manager Team CMT

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  She was the 2012 National Champion Paratriathlon Open Division. In 2013 she qualified as a member of the Team USA Duathlon Team and was eligible to compete in 2014 at the Age Group World Duathlon Sprint Championship in Pontevedre Spain.  She chose instead to represent the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

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:

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 152 members in 30 states. We also have members in Australia, Canada, Vietnam, Turkey, Finland and Iran. If you wish to join us visit our web site; or

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

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