|Alyson OConner of Astoria Oregon|
I took a little break during the Olympics. I figured everyone else would be watching as well and know one would read anything I published during the games. I was so proud of our athletes. I wish I had half the talent any of them showed this past two weeks. I got a little taste of elite competition when I did the Para-triathlon National Sprint Championship in Austin. I can't imagine how exciting it must be to compete at an Olympic games. I know if I ever won a medal at the Olympics I would cry like a baby. I cry now when I watch the medal ceremony and they play the national anthem.
We do have a para-Olympian on our team. Anthony Zahn, a cyclist will be headed to London at the end of the month. He was a bronze medalist in Beijing. Best of luck Anthony! So proud of you!
I am proud of all of our Team CMT members. So many of you have asked lately what you can do to help, so I thought I would put together some of my thoughts about some simple things you can do as a Team CMT member.
You can see Alyson O Conner pictured just after she finished her 5 K race. Participate in events. Runs, walks, bike rides and walks are all great ways to raise awareness when you wear your Team CMT gear. Be ready to answer questions about our team and our mission. Point them to the web sites at www.run4cmt.com and www.hnf-cure.org. Send me the pictures of the event so I can do a story. If you aren't an athlete wear your tee shirt when you go to large public events. What a great way to bring awareness.
I need pictures of you in your Team CMT tee shirts and singlets. We need these for our web sites, blog, brochures, and presentation materials. We are trying to get sponsors and right now it looks like we have about 6 people on the team. I know you are all out there. You are the face of Team CMT. One of the things I do to raise awareness is to speak to groups. In order to do a good presentation I need lots more pictures. You all look wonderful in your Team CMT shirts. I am not photogenic at all, so please help me get lost in the crowd when you all send in your pictures. We can never have too many pictures.
Team CMT has a You Tube site. So if you have video from any event or want to send video telling your story, send them to me and I will post on You Tube. We have a couple of nice videos on there and we can use more. These are the types of things media check out when they consider doing a story. We need lots of content. There is a really nice video of Team CMT member Charlie Norris talking about why he runs for his nephew. We could use lots more of those.
Along with the pictures, I like to do a story about every member, when you are fundraising or doing events. We need to put a face to CMT. I want to bring this disease out of the shadows so everyone knows about CMT. We want to solicit funds for research. People don't give to a cause they know nothing about. They give because we put a face and a story to this disease. My biggest donor when I ran Boston was someone who saw my story on the HNF site. Many of you have inspiring stories and I want to tell your story. Besides I am sure everyone is getting tired about hearing about what I am doing.
Join us on the Team CMT group on Facebook. Post there when you have a question about training. Post there when you are running an event. I want to create a community. I know most of you because I recruited you or got to know you via email. Several members in Virginia have connected and are running a Saturday morning running group.
When I put up a blog or a member is running an event, share it on Facebook. This helps spread the message about what we are doing. When you run an event remember to mention you are part of Team CMT. Doing this pushes up the hits on google and when someone does a search on running and CMT we are more likely to come up.
If you have a Twitter account, post when you are doing a Team CMT event. You can also send out a tweet when I put up a new blog entry.
If you enjoy being on Team CMT, recruit others. It is so much fun to have others on Team CMT running events. When you recruit friends and family you will have other team members at your walk, run, triathlon or bike ride. I have a nice recruitment poster you can put up at work or at your gym. Just email me and I will be happy to send one.
I welcome guest bloggers. So if you have expertise to share on training, diet or fundraising I would happy to consider your entry for posting. Share our blog on Facebook when a new one is published.
Want to show your Team CMT pride. I routinely hand out Team CMT pens. I have a Team CMT yard sign in my yard. Cafe Press and Vista Print have a variety of water bottles, car magnets, banners, coffee cups etc that can be imprinted with the Team CMT logo. Just email me and I will send you the logo. I have Team CMT logo clothing that I wear to expos and after runs. That often starts the conversation about Team CMT.
We always need help raising funds. You can put up a fundraising page on the HNF site. I will write more in my next blog about ways to help raise funds.
Can you design brochures, write articles, design web sites? Do you have a talent you want to contribute to help Team CMT grow. Let me know, because there is room for everyone to contribute.
Thank you so much to every one of you on Team CMT. The work each of you do is important. You do make a difference. We are going to make CMT a household word. Thank you so much for the work you do and for your passion for this cause. So proud of all of you!!!
Founder & Manager Team CMT
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.