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Wednesday, June 22, 2011

Letter to Boston Athletic Association

" A man must love a thing very much if he not only practices it without hope of any fame or money, but even practices it without any hope of doing it well."  G.K. Chesterton

This quote can certainly apply to my running.  I am no longer very competitive due to the CMT, but I keep running and competing anyway.  For all it challenges, running and competing brings me great joy.  I feel good for hours after a good run or bike ride. I live to measure myself in a race. I love the day to day challenge of completing a marathon training program. This is nothing like achieving a long held goal.
For years I had a goal of running in the Boston Marathon. It is a dream of any serious runner. It is the superbowl of running. It is a yardstick for any runner.  A Boston Marathon jacket is a coveted item.

Because of my CMT I have no hope of ever meeting the time standard to compete in Boston Marathon. I found out however there is "mobility impaired" division for those who have conditions that affects their ability to meet the time standard. 

This week I sent the Boston Athletic Association a letter to apply for entry into the 2010 race. Thanks to Team CMT member Joyce Kelly for helping me put the letter together.  Here is a copy of the letter;

RE:  Boston Marathon 2012, Mobility Impaired Division

Dear Registrar:

My name is Chris Wodke and I am applying for admission to the 2012 Boston Marathon in the Mobility Impaired Division.  I am a 53 year old female runner with Charcot Marie Tooth Disease (CMT).

CMT is the most commonly inherited neurological disorder affecting 150,000 Americans, but most people including most medical professionals have never heard of it. I am raising awareness of this insidious disease by recently organizing Team CMT, a group of 21 athletes in 8 states.
Running the Boston Marathon is a major component of my mission to raise awareness of CMT.  In addition to competing in as many running and triathlon events as we possibly can, I established a web site and blog where I raise funds and awareness of CMT. You can learn more about this irreversible condition at the site;

CMT causes progressive deterioration of the feet and lower leg muscles, resulting in foot drop, tripping, falls and fractures.  Additionally, it causes muscle tightness in the calves and constant burning and tingling in the feet as the nerves die and the muscles atrophy.  It also causes these identical symptoms in the arms and hands.

 For me, CMT means blisters and burning when I run and declining run times as my leg and foot muscles weaken and atrophy.  I do not have enough flexibility in my legs to walk properly, much less run.  Additionally, CMT causes profound fatigue.  The rigors of marathon training are a day to day challenge. My doctors are amazed I am running any distance, much less distances of 26.2 miles. It is unheard of in a patient with CMT.  Despite the CMT, I have completed five marathons including the Madison Marathon this past May, with a finishing time of 4:51. Moreover, the Madison Marathon is a very hilly course.  Due to CMT, regardless of how much I train, I cannot achieve the normal qualifying time standard.

With this letter, I am supplying the following documentation for my mobility impairment:

  • Letter from local MDA office.  CMT is one of 40 neuromuscular diseases covered by MDA.
  • Diagnosis by Dr. Linn of the MDA Clinic at Froedert Hospital in Milwaukee
  • Physician’s notes from Dr. Lobeck with initial diagnosis of Type 1a CMT.
  • Letter from the CMTA documenting CMT limitations regarding mobility

Please let me know if there is anything else I need to supply or what additional steps are necessary to apply for the 2012 Boston Marathon. Acceptance to this race will be an important step in making the public and health professionals aware of this disorder. 

Recently, I was told by two physical therapists people with CMT cannot run.  I have 4 athletes on Team CMT suffering with this condition. We want to show the world our love of running and competition and we will not be stopped by CMT.  Through participating in various running competitions, together we will strive to achieve our dream of a “World without CMT.”  Raising awareness is the first step on that journey.

I know there are many worthy athletes hoping for a bib in the Boston Marathon.
I respectfully request you give my application serious consideration.   I am not running for myself, but for the 150,000 Americans with CMT, for my family members with CMT and for the other members of Team CMT with this disease.

Thank you very much for your time today.  I sincerely look forward to hearing from you soon.

Very truly yours,

I am not anxious about the decision or the outcome. It is in God's hands now. If I don't get in, he has something else in mind for me.  Hopefully I hear something soon.

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 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.

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