"After climbing a great hill, one only finds that there are many more hills to climb."- unknown
It was a year ago this week I flew to Philadelphia to meet Allison Moore, President of the HNF. Allison drove down from New York just to meet me and talk about a partnership. I connected with Allison through Facebook. I tried to recruit her sister Kim Farren when she posted a fundraising message for the Richmond Marathon and Kim connected me to Allison. Allison and Kim are sisters.
I loved Allison from the moment we met. She shares the same passion for raising awareness of CMT through athletics As a CMT affected athlete she understand the challenges of battling CMT and trying to stay active. Allison is so committed to this cause she does not take a salary from the foundation and works full time on HNF work.
She offered financial support and resources to promote our cause. I knew by joining with the HNF Team CMT would be in good hands if I was not able to support the team. Managing a team of our size takes money and time. HNF offered support and resources to help grow the team.
It has been an eventful year. Although the mission of the team is raising awareness, members have started raising funds. The HNF currently supports research at the University of California Davis Medical School, the University of Southern California and Dr. Chetlin's research on exercise and CMT at the Medical School of the University of West Virginia. So far the team has raised $29,000 for research and HNF programs.
In addition to research, and Team CMT, the HNF runs Camp CMT and the school program Arlene on the Scene to educate kids about CMT.
We've grown to 108 members in 24 states, Canada, Vietnam and Iran. The CMTA has an awareness month, Team CMT raises awareness every month.
Members have participated in events every month this year all around the United States and in Europe. I am awed and humbled by the accomplishments of the 24 athletes on this team with CMT. We have athletes doing Iron Man competitions, and marathons. Things medical science says we can't do.
We have three team members that have qualified for the Paratriathlon Sprint Championship and two team member with qualifying times for the Boston Marathon. This team has raised awareness to a degree I never imagined with I started this team.
Last month we introduced Team CMT kids and we have our first team starting in Dallas. Morgan Johnson will be leading a group through Playtri. I am looking forward to many more groups in the future. I want to make CMT as well known as MS. No one with CMT should get a blank look when they tell someone they have CMT.
This team has done much to raise awareness. We have climbed that small hill. We still have allot of work ahead of us to find treatments and a cure for CMT. I don't think Team CMT could have a better partner.
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.