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Friday, December 16, 2011

Team CMT Partners with Hereditary Neuropathy Foundation


While I was in Philadelphia visiting family last week I also squeezed in some Team CMT business. First up was a meeting with Team CMT member Jude Burton. I got to also meet Jude’s adorable daughter 14 month old Harmony.  Jude recently ran the Philadelphia Half Marathon on November 20th as a fund raiser for CMT. So I got to hear about her race and share experiences of being an athlete with CMT. It was really awesome to meet her in person after seeing so many face book posts and exchanging emails.  The best part about starting this team has been meeting athletes from the team.  I never expected the team to grow so large or meet so many other athletes fighting CMT.

I also met with Allison Moore, President and founder of the Hereditary Neuropathy Foundation.  After discussions with Allison I have decided to affiliate Team CMT with the Hereditary Neuropathy Foundation (HNF.)  This was not an easy decision since like many of you on the team with CMT, I am a member of the CMTA. I decided to partner with HNF for the following reasons;

  • The foremost reason is the passion and vision Allison Moore brings to the table. Allison has CMT and at one point in her life was training to run the New York Marathon. She understands the challenges being an athlete with CMT. Even more important she is an enthusiastic supporter of our efforts.  In talking to her I realize our visions are closely aligned.  I think Team CMT and the HNF are a perfect fit.
  • The HNF is offering financial support for team uniforms and web site. I have been funding the team out of my personal resources. HNF help will free up my funds for my training and contributions to CMT research.  I also need additional help in managing this team. We have grown to 62 members and I expect we will grow even larger.  We have grown so large, managing this team has become a part time job.  I feel if I need to turn over management to them at some future date, the team would be in good hands.
  • The HNF is providing much greater exposure and visibility for our team. They have created a tab for Team CMT on the HNF web site. They are also using social media to promote the team.  They will be posting my blog entries and tweeting updates using their social media.   There may be a media day soon in New York for video for the HNF web site.
  • HNF has media greater media connections and visibility. My mission in starting the team was to promote awareness of CMT.  HNF will partner with us to get the story out about the amazing athletes on our team.  This will be especially important as I run the Boston Marathon this year and other team members run Boston or other high profile events in years to come.
  • I support the HNF model of fundraising through athletic events and their support for physical activity by those with CMT.  Their experience in doing fundraising will be helpful.  There has already been talk about HNF helping to put together an event in Richmond next year. Hoping to get many Team CMT members to that event. It would be so great to meet more of you.
  •  My fundraising efforts in Boston will go to fund the research on the effect of exercise on CMT. This study is headed by Dr. Robert Chetlin at the University of West Virginia Medical School. This study is being done in partnership with HNF.

 For most of you on the team the only difference you will see is a new uniform. I hope to have a new design to show you soon.  I expect several team members will debut the new uniform at the race series in Allen Texas on December 31st.  I will be running the half marathon and Team CMT member Morgan Johnson will be running in the 5K.

I am still a member of the CMTA and still raising funds for them. I am grateful for their support and the use of the STAR logo on our current uniform.

 As we move forward I will be contacting each team member to see if you are interested in moving forward with the HNF affiliated team.  We should have the new uniform design soon as well.


Chris Wodke
http://www.run4cmt.com/

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