Wednesday, December 21, 2011
Two Teams for CMT?
" It's not the beginning or the end of a race that counts, it's what happens in between."- unknown
Team CMT is now working with the Hereditary Neuropathy Foundation. It is an exciting time for us because their support is going to take us to a larger stage of raising awareness and research funds.
I am loyal to the CMTA and will continue to work with them. I plan on speaking to the Chicago support group in January about Team CMT and on remaining active in my CMTA support group.
I have nothing but good things to say about the organization and the people I have met through the CMTA. I am grateful for the CMTA members on our team. I have gotten to know many of you and meet a few of you in person. I cherish eveyone on this team, because I live the same struggles all of us with CMT face everyday.
Not everyone sees things from that perspective. There has been some talk of starting a new team through the CMTA. Anyone on the current team is welcome to move to the CMTA team. There will be no financial support or social media support such as facebook for me.
That is not meant as a punishment. Running one team has become a partime job and there is no way I can personally support another team. I have limited time and resources and will focus them on Team CMT.
All of my efforts will now be turned to preparing for Boston and helping the HNF affliated team to thrive and grow. I have a race to train for, sponsors to line up, funds to raise.
What I want us all to focus on is making everyone aware of CMT and in finding treatments and a cure. I feel HNF is the best fit for that. A parellel effort does not hurt the current Team CMT. I say the more seeds we sow, the greater the reward we will have. I don't want any battle lines drawn or drama due to move to HNF. We need all of us working toward our mission. Fighting only drains our efforts and dilutes our effectiveness. I don't have the time, energy or inclination to engage in any drama over this change.
I would like everyone of you on the current Team CMT to join us on the HNF supported team. The change will be seamless to you except for the uniform change. I will contact every team member in the next few weeks to ask you to stay with Team CMT. If you choose to leave I will respect your decison. I will wish you the best of luck with no hard feelings and hope to compete with you at some future event.
Thank you for your time and support this last year. It means more to me than you will ever know. Please let me know if you have any questions or concerns. I'm here for you.
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