Team CMT News

Robert Kearney and Cheryl Monnat at Whitlestop Half Marathon, Ashland Wisconsin

" I am only one, but still I am one. I cannot do everything, but I can still do something. And because I cannot do everything I will not refuse to to the something that I can do."- Helen Keller


Running in races and triathlons may seem like a small thing,  For someone with CMT that trips over their own feet, doing athletic events is a big deal  Appearing in events wearing our  Team CMT gear is the something we do to raise awareness of CMT and funds for CMT research. And we are doing it at events all over the country and in some cases abroad. Here is just a little of what has been going on the last month.

Some are running long distance events for the very first time.  Joe Torello  will be running the Philadelphia half marathon the Sunday before Thanksgiving.  He's using the event as a fundraiser and has set a goal to

Joe Torello

raise $5000.  He is almost half way to his goal and has raised $1225.
You can see Joe's story on the HNF site at http://hnf.donorpages.com/TeamCMT/JTorello1/
This talented member of our team is also appearing in Music Man in Philadelphia. Go to the link and read all about the part he plays in this classic musical.  It has been a pleasure to read about Joe's progress. He is really excited to be doing this event. Running a half marathon is a big accomplishment for anyone. Thanks for running for Team CMT and for raising funds for us!

Barb Vonada of Virginia will be running the Army 10 miler and also raising funds for CMT. All the money raised by Team CMT members will go to fund the research of Dr. Robert Chetlin on the effects of exercise on CMT.  Barb is a very active member of our team and has been part of a Saturday morning running group with team member Courtney Hollett and Kim Farron.  If you would like to check out Barb's page just follow the link  to learn about she she is running an raising money for CMT.  Thanks for all your efforts on behalf of Team CMT. http://hnf.donorpages.com/TeamCMT/BarbaraVonada/

Joe and Barb are not the only Team CMT members running and raising money.  The list of all team members and the links to their fundraising pages can be found at http://hnf.donorpages.com/TeamCMT/stats/
Other team members raising funds include;

• Darrell Wright
• Judy Coates
• Shannon Hays
• Morgan Johnson
• Alyson O'Connor

Megan Seebeck

Megan Seebeck will also be setting up a fundraising page. She was scheduled to run the Marine Corp Marathon in Washington D.C. at the end of October. But duty called Marine Seebeck to Yuma Arizona.
Meagan is going to recreate the marathon in Yuma and is dedicating the effort to her dad who has CMT.
Thanks for running for Team CMT and raising money!  Thanks for your service to our country. We are all proud of you.

Joy Von Werder Florida

 My coach Joy Von Werder has been very busy running in two triathlons since our last newsletter.  In her most recent she took first place in her age group. Her other triathlon was in Miami.  It was pouring rain when she racked her bike.  It drizzled on the boat as they made their way at 6:15 a.m. in the pitch dark.  Sat on the wet sand for 45 minutes waiting for the start. This was an Olympic event and had an ocean swim.  Quite a challenge. Last year she told me they could not even see the water it was so dark. She just grabbed a friends hand and they jumped in.  The swim part of a triathlon is scary enough without having to start in complete darkness.  Joy has CMT so she has challenges with the run and bike just like many of us do.   Joy has done all distances from iron man to sprint. She knows the challenges of being an athlete with CMT. That is why it is so great for me to have her as my coach. Joy is a level 1 USAT certified triathlon coach. She was a great help in preparing me for nationals last year.  Because she competes she knows how an athlete thinks and give me much needed support on the mental aspects of competition. Check out her web site at www.traintotri.net

Cheryl Monnat and Robert Kearney have been two of our most active members.  Not only do they participate in many local events, but Cheryl almost always picks up an age group award. How cool is it to see someone in a Team CMT singlet picking up post race hardware.

Cheryl and Robert ran the Brewers Mini Marathon on September 21st. The race included a lap around the warning track on Miller Park here in Milwaukee. They both crossed the finish line of the half marathon together.  Robert, Cheryl and myself were the first three runners on Team CMT. We did our first race together on April 29, 2011.  We have now grown to 106 members in 24 states.

 Cheryl and Robert also did the Whistle Stop half marathon in Ashland Wisconsin. They said it was perfect for them because there was a beer festival on the same day in Ashland which is in the very north of Wisconsin. Both races were rainy. They finished both because they thought running in the rain will be good training as they prepare to run the Dublin Marathon on October 28th. This will be marathon #2 for both of them. They both ran the Lakefront Marathon here in Milwaukee in October of 2011. Good luck and raise a glass to your fellow Team CMT members after you finish the marathon.

PUP List

PUP is the physically unable to perform list. I think they use that term in football.  I have not been able to run since the middle of September. I was scheduled to run the Brewers Mini and the Richmond Half Marathon.

I've been fighting what I though was a muscle knot on my right ankle. In fact I was injured at the National Championship in Austin. I competed on a bad ankle all summer. As I was ramping up to do the half marathons the ankle got more painful. I finally got to a runners clinic  and have been diagnosed with peroneal tendinitis.  That means no running for at least a while. I start physical therapy on Monday. In the mean time I am cross training and trying to enjoy the lighter workout schedule. My body is way over do for a rest. I miss running and fall is my favorite time to run. Can't wait to be healthy again.

So sorry Richmond team members. I will not be able to join you this year.  I really wanted to be there to meet all of you.

I've just touched on a few of our team members. I know there is lots of activity out there. Almost every weekend we have a team member doing an event in some part of  the county. Thanks to everyone for your efforts to raise awareness of CMT. Thanks to everyone raising money for CMT research!  You are all doing your part and I am very proud to be part of Team CMT!

Chris Wodke

Founder & Manager Team CMT

www.run4cmt.com

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.