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Saturday, April 30, 2011

Team CMT Makes Debut

Three members of Team CMT were on hand for the inaugural run in Brown Deer this morning. Members Cheryl Monnat, Robert Kearney and Chris Wodke participated in the Badgerland Striders 10 K race. Robert was running his first 10 K.
It was a windy and 50F at race time. The stiff head winds made for a challenging race.  About 400 runners ran in both the 5K and 10 K races. For those of you who are metric challenged, a 5K is 3.1 miles and a 10 K is 6.2 miles.
Cheryl Monnat took first place in the 50-54 women's group with a time of 48:30, followed by team member Chris Wodke in 2nd place with a time just over 58:00 minutes. Robert Kearnery had a time of 50:00 minutes, well under his goal time of 55 minutes and a great effort for a first race.
It was a great kick off event in our efforts to raise awareness and funds for Charcot Marie Tooth disease.

I took a cool down run while Cheryl and Robert waited for the awards ceremony.  A trip and fall during the cool down remind me of why I started this effort. I have foot drop on both my feet causing me to sometimes trip when I walk or run.  It happens at the most unespected times. A year ago I didn't know what was causing it. Every time it happens it renews my commitment to raise awareness and to find a cure.  Thanks to all the Team CMT members for joining me in this goal!



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.

Sunday, April 24, 2011

Piano Prodigy Vows to Raise $1 Million for Research

Fredrich Buechner said " Calling is the place where your deep gladness meets the World's great need."

Both are combined in Alex Amble, a 15 year old piano prodigy  fom Minnesota whose has pledged to raise $1 Million for CMT research with his music.   Alex has  Charcot Marie Tooth Disease and is helping the MDA to find a cure with his project.  He got is diagnois two years ago.  He also has the unique ability to piano backwards and upside down.


Alex began playing the piano when he was 3. He has composed a piece of original music you can see performed at u tube. Alex began composing this song when he was 11. The song titled "When the Sun Goes Down"  is part of a CD he is selling on line.
If you buy the song all the proceeds go to the MDA for CMT research. If you buy the album a portion of the proceeds will go to MDA research.
You can see his page and purchase his album from his web page. http://www.alexamblemusic.com/home.html
Alex says he is a big dreamer. He isn't just raising money, he is showing raising visability for CMT. He is being a great role model as well. CMT will slowly steal his ability to play.  Let's hope he is successful in reaching his goal. All of us with CMT are hoping for a cure. We each hope to stop CMT from taking away our deep gladness. There is no telling what Alex can accomplish. There is not telling what you can accomplish when you answer your calling.



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.

Monday, April 18, 2011

Thoughts on Boston

Kenyan Geoffrey Mutai won the Boston Marathon today in a time of 2 hr and 3 minutes. The fastest any marathon has ever been run. My fastest time for the marathon was 4 hrs in 1996. My current projected time is 4:40. I am 40 minutes slower due to the loss of muscle strength from my CMT.

At his current pace Mutai could do the marathon twice and still have time for a shower after.  Next year when Mutai defends his title I plan to run Boston.

To run Boston you must "qualify" by meeting a time standard for your age group.  The time standard for women in my age group is 4:05.  I am on week 13 of an 18 week training program for my qualifying race in Madison Wisconsin on May 29th.  I have one shot to prove myself and unless a miracle happens I won't make the time standard.

There is still hope because the Boston Marathon has a divison for "mobility impaired" athletes.  I may qualify because of my CMT.  It certainly impairs my ability to make the time standard and I am losing speed as the disease progresses.  Still I feel lucky to even be running much less attempting the marathon distance. As a mobility impaired athlete I have to prove I can complete the distance in 6 hours.
I have one shot to prove to the Boston Athletic Association I can cover the marathon distance. Madison on May 29th is my one shot.

I 've trained hard but I can't be certain what will happen on race day since I haven't done a marathon in 7 years.  The CMT cause challenges with my running gait.  My first marathon my feet were so blistered I bled thourgh my shoes. I can't be certain if I can deal with the pain that will come the deeper I go into the race.

Why do I do it?  Because of the challenge. Running a marathon is physical, but it is mental as well. Can I meet the challenge to discipline my mind as well as my body? Can I will myself to go on when my body is willing but my mind says no? Can I push through the discomfort?  Am I strong enough?

Finishing is the absolute best feeling in the world. When you finish you feel as if there is not a thing in the world you can't do. The success carries into your entire life. It is amazing how much you can do when the word quit is not in your vocabulary.

Why Boston?  Boston is the Super Bowl of running events.  The 30,000 slots for this year's race sold out in less than 24 hours. It is on the "bucket list" of any serious runner. It is the oldest marathon with the grandest tradition. It is the only marathon with a time standard.  To run Boston is a crowning achievement for any runner's career. What drives me is the visability and awareness I can bring for CMT. I plan to use my Boston run to raise awareness thoughout my training and Boston run. I plan on having Team CMT at the event. Watch for us. We will see you at the finish line!

Sunday, April 17, 2011

Recruiting Athletes for Team CMT

Ever see the big name athletes in  races and triathalons wearing their team uniforms. Wish you could be sponsored too or part of a team?  You have a chance to join Team CMT. Team CMT is now recruiting Triathletes, Runners, Duathletes, and fittness nuts to become members of Team CMT.
I am seeking team members to help me raise awareness of Charcot Marie Tooth Disease. 2.6 Million people worldwide have this disease and most medical professionals of never heard of it.

A few facts about CMT
  • It is the most common inherited neuropathy, affecting 150,000 Americans.
  • Is a slowly progressive, causing deterioration of peripheal nerves that control sensory information and muscle function of the foot/lower let and hand/forearm.
  • Causes degeneration of the peroneal muscles (located on the front of the leg below the knee.
  • Causes foot drop, walking gait problems,  high arches, hammer toes, problems with balance, problems with hand function, loss of normal reflexes and curvature of the spine.
  • There is no effective treatment, although physical therapy and moderate activity are beneficial.
  • Can in rare instances cause severe disability.
  • Affects all genders and races.
  • If one parent has CMT there is a 50% chance of getting the disease.
  • The gene that causes CMT has been identified.
  • STAR- the Strategy to Accelerate Research- is the effort to fund research. The goal is to find a treatment in 3-5 years.
I have set up a web site (http://www.run4cmt.com/) to raise funds for reasearch and raise awareness. The main function of the Team CMT is to raise awareness.  Team CMT members will get a high quality Eastbay running singlet with the Team CMT logo.  We only ask you wear the singlet when competing, then send a picture. Pictures will be posted on the Run 4 CMT Facebook page.  Take a moment to visit the website at http://www.run4cmt.com/ to learn about this effort. Select the Team CMT tab to see the singlet and join the effort. Our goal is a world without CMT.   What keeps me going is we are so close to a cure. Please help us get closer.  Visablity means awareness. Awarness will be better diagnosis by the medical community and more funds for research.