"It is not enough to do your best; you must know what to do and then do your best."- W. Edward Demming
I first saw the You Tube Video "I Am Unstoppable" Wednesday night before our time trial in Computrainer class. Coach Heather likes to show us videos to inspire us and the video about Spence West is the one she shared Wednesday night.
Spence West was born with the genetic condition Sacral Agnesis. It caused doctors to amputate his legs just below his pelvis when he was a very young boy.
He struggled all his life to fit in. A friend that knew he was struggling asked him to go to Kenyan to build a school for a charity. It changed Spenser's life. He learned several things; first he found a purpose for his life that gave him meaning and he realized everyone has challenges. He felt he had to do something with the life he was given to make a difference.
While in Africa he climbed Mt Kilimanjaro. This man with no legs inspired his friends to finish the hike when they fell sick. He told them they would go as slow as they needed to go and take it one step at a time.
This man with no legs will let nothing hold him back. He wanted everyone to know that we all have limits, we just have to try.
So what will it take you to become unstoppable? What is your purpose and what are you meant to do?
When I was diagnosed with CMT, I realized I too had a good story. To be able to run long distance is a rare with CMT. I knew I had to use my running to make a difference. My challenges are small compared to Spenser's but I agree we all have challenges and we all have to try.
So to those in the CMT community what will you do to be unstoppable? What will you do to raise awareness, find treatments, raise money for research and ultimately a cure?
No matter what your limitations we can all help.
We won't raise money for research until CMT is widely known. It is difficult to raise money for a condition no one has heard of. So share posts from the HNF or my blog on Facebook. Ask your family to share them as well. Doing this is something anyone should be able to do. Give a copy of the HNF publication on CMT, give a copy of my book to friends and family. Support those of us working to raise awareness. Join the CMT support groups on Facebook and be supportive of others in the community.
We each need to be open about having CMT. Be willing to tell others you have CMT and what it means to you personally. Be the face of CMT among your family and friends. We have nothing to be ashamed of. We have done nothing wrong. We were born with CMT. So be brave and be open.
Join the HNF patient registry. We need this database of those affected by CMT. This will be important as we someday move toward treatments and a cure.
I have seen members of the CMT community be critical of those working to raise funds or awareness. Sometimes it is because we are working for the MDA or the HNF. It is time to stop creating divisions within the CMT community. The CMTA, MDA and HNF are all supporting research and programs helping those affected by CMT.
Leadership in these organizations also need to be honest about how close they are to treatments and a cure. If you have not even started clinical trials you are not close to a cure. To say otherwise raises false hope and is deceptive. It looks like a ploy to raise money for research. If that statement makes you angry, maybe it is because your organization is the one doing it.
Support Team CMT
We now have 140 members. Join our team and walk, run, swim, bike or just wear our shirt to support us. Contribute to one of our fundraisers. We will have two members running the Boston Marathon this year. I will be promoting these efforts in the month to come. I hope you will support us. That support is so important. Several members have told me recently they felt so alone until they joined Team CMT. Now they have a group that supports and encourages them.
Maybe you have ideas for your own fundraiser. We would be happy to hear about them.
I hope like Spenser none of us lets the challenges in our lives defeat us. We all have a purpose and a part to play. What will you to to be unstoppable?
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 140 members in 27 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.