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Sunday, April 14, 2013

It takes a team-- Pre Race Boston

"I thought about how many preconceived prejudices would crumble when I trotted right along for 26 miles."- Bobbi Gibb the first woman to finish the Boston Marathon 1966

Bobbi Gibb was denied entry into the Boston Marathon in 1966 because she was told woman were not capable of running more than 1 1/2 miles. Amateur rules at the time forbid women from running anything longer than that in competition.

She ran in 1966 anyway, sneaking into the race. She electrified the running world by finishing in 3 hours and 27 minutes.  She beat 290 men in the field of 417.

Bobbi Gibb changed the perception of women.  Efforts like hers paved the way for changes for woman in sports and in larger society.  She showed the world what women could do to make changes happen for other woman.  She was one of many pioneers that paved the way for women of my generation.  I am sure even she did not realize the effect of a simple act of running a marathon.

Those of us with CMT doing runs, walks, rides, and triathlons, are pioneers as well.  People with CMT were once told to go home and not exercise. I still hear from members of the CMT community that working out too hard is bad. They were once told hard exercise would accelerate their disease.

When one of our Team CMT members asked the CMTA to start a team, she was told people with CMT can't run.  Now they have a team of their own and tell their members to be active. Event by event we are changing notions about what a CMT affected athlete can do.  As I read posts on Facebook, I see many many people with CMT now talking about exercising.  Exercise is so important for staying strong and living a full life with CMT.  We have already made a difference!  Team CMT members be proud of the part you play.

Members of this team have done events that are a challenge for any athlete.  Three of our team members have done Ironman Triathlons, many run marathons and half marathons. We are showing the world what someone with CMT can do. When I found out I had CMT, I could not believe that 155,000 other Americans had this disease.  That is as many as have MS.  I could not believe I have never heard or CMT. I could not believe so many others were not aware of this disease.  That did not seem right to me. I set to change that with my efforts and those of my Team CMT teammates.

Tomorrow in Boston there will be 500,000 spectators.  That is half a million people that will see the Team CMT singlets on our three members running this event.   Raising awareness puts a face to this disease.  Raising awareness is the first step to raising funds.   In a marathon the finish line seems far away. Sometimes it seems like treatments and a cure are far away as well.  I know with hard work we will get there.  I know the members of Team CMT are a large part of that battle. Running a race like Boston may seem like a little thing, but I know some how it is all connected to our fight for treatments and a cure.  Just like the finish line, it can't come soon enough.

When I was getting a chiropractic treatment a few weeks ago, the doctor remarked "I had a whole team working on me."  I laughed and said "It takes a whole team to keep me going."    I also have a whole team behind me.

Thank you to the members of Team CMT. We are in this together. You inspire me.  I will be thinking about you all as I run tomorrow.  Thanks also to coach Joy Von Werder, you answer my endless questions, you keep me calm and centered.

I wonder if Bobbi Gibb had doubts when she ran Boston or if she had any idea of the effects of her run. Sometimes the simplest acts can have the most profound influence.  I know I have doubts every time I line up for one of these events.  I am so tired at the start, I ll wonder how I will ever run 26 miles.  I hope the efforts of Team CMT can have the same far reaching effects of the first woman to run Boston.


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 121 members in 26 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.

1 comment:

  1. So glad to read that you are ok and this post was so well written and truly inspiring. Thanks for all you do!