"Until one is committed
There is hesitancy, the chance to draw back
Concerning all acts of initiative (and creation)
There is one elementary truth
The ignorance of which kills countless ideas and splendid plans;
That the moment that one definitely commits ones self
Then Providence moves too.
All sorts of things occur to help on
That would never have otherwise occurred.
A whole steam of events issues from the decision
Raising in one's favor all manner
Of unforeseen incidents and meetings
And material substance
Which no one could have dreamt
Would have come your way.
Whatever you can do or dream you can, begin it.
Boldness has genius, power and magic in it."
When I was diagnosed in 2010 I set the goal of running the Boston Marathon to raise awareness and money for CMT research. Never mind that I'd given up competitive running, that I hadn't run a marathon in over 10 years and my CMT had left me far short of the qualifying time. Oh and I am a slow middle age woman with a neurological disease that makes running a challenge.
I wrote the date April 16, 2012 on a piece of paper and pinned it to my bulletin board at work. I told everyone I was going to Boston. I was committed. I didn't want to just run Boston, I wanted to represent those with CMT by wearing a Team CMT uniform. And I was going to tell the world about it, if they would listen.
Some truly amazing things have happened since I wrote down that goal.
- When I couldn't get a CMT based charity certified, I was poking around the Boston Marathon web site and stumbled onto the Mobility Impaired program. It's for athletes with conditions that keep them from making the time standard. While the B.A.A. had never heard of CMT, it qualified.. Team CMT member Joyce Kelly helped me through the process.
- Team CMT was founded in April of 2011 and we now have 78 members in 17 states. We've run dozens of events both in the United States and Europe. I know soon we'll reach my goal of over 100 members.
- Despite hearing from several medical professionals that people with CMT shouldn't do anything do strenuous, we have 16 athletes on the team with CMT. They amaze and inspire me.
- This year I'll represent Team CMT in Boston. Next year we have three members with qualifying times that will allow them to apply to the Boston Marathon.
- I was introduced to Allison Moore of the Hereditary Neuoropathy Foundation when I saw a Facebook post from her sister Kim about running the Richmond Marathon for CMT. Team CMT and HNF both share the same mission of raising awareness of CMT through athletic events. Team CMT is going to explode under the partnership with HNF. The energy Allison brings to this cause amazes me every time I talk to her. I can't wait to see her again in Boston.
- I met and hired sports publicist Gail Sideman to get the word out in the media. It was Gail that arranged the TV, and print media interviews. So many people now know about CMT that have never heard of it due to her efforts.
- Duane Denny stepped forward to help raise money for the Boston run. Duane is a promotions professional and fitness trainer. He ar rangedthe Boston radio interviewand a fundraiser at the John Harvard Brew Pub. It is going to be an annual event.
- I have met or emailed with athletes from all over the country. Some of them are going to be in Boston to cheer me on and come to the fundraising event. Mary Louie, Megan Seebeck, Duane Denny, Louise Gehardt I can't wait to meet you. I am more excited about that , than running the race.
- Gerry Lynch and his family, adopted a ten year old girl from China last year. His daughter has CMT. He has stepped forward to pledge $10,000 to match funds raised as part of the Boston effort. I remember thinking one night I did not know how I would ever reach the $10,000 goal I set. I remember telling God it was in his hands. That week Gerry stepped forward. I originally had $50,000 in mind. I need think bigger and bolder. Really looking forward to meeting them and thanking them in person.
It has been an amazing journey so far and I think it's just the beginning. What will you commit to? Think big and be bold and then commit to it.
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.
Running, triathlons, impaired athlete, paratriathlon, USAT, running and CMT