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Saturday, October 15, 2016

HNF Patient Centered Conference New York


Estela Lugo, Jenny Decker and Brent Baker at HNF  Conference


Life has been so hectic this month. I have been so busy training and traveling I have not had time to blog.

On October 6th I attended the Hereditary Neuropathy Foundation Patient Centered CMT conference in New York.  I was asked to speak as part of a panel on exercise and nutrition. The panel was mostly Team CMT members.

The team was represented by Jennifer Decker, Kristin Gelzinis, Estela Lugo and me. Also on the panel was researcher Brent Baker  Dr. Baker presented his research on exercise and type 1A CMT..   The panel was moderated by Stefanie Sacks author and nutrition expert.  I was really honored to sit next to my fellow team members and listen to their inspiring stories of how exercise had changed their lives for the better.  Kristin has improved so much she is no longer in a wheel chair. Jenny Decker discussed her solo kayak trip around the big Island of Hawaii. Estela told how yoga has improved her fitness.

I shared the story of the founding of Team CMT and challenged the audience to use their talents to help us find treatments and a cure.

It was a day filled with great panel discussions on topics such as:

  • The patient as expert, health maker and collaborator
  • Public Policy
  • Latest research discoveries
  • The fearless caregiver
  • Gaps in patient reported and clinical outcome measures and barriers to therapy development
  • The art of being a successful patient
  • Participating in a clinical trial.
  • Update on Pre-clinical trials
The best part of the conference was meeting everyone. I met Robert Prior, a young scientist from Ireland with CMT  1X doing research on CMT. 1A. He told me his is going to find a cure for one type and then move on to the next. He moved to Belgium to study because there was little CMT research in his native Ireland.

I got to meet Dr. Walk, who will be in charge on the Pharnex trial in Minnesota.  I got a chance to ask him a few questions about the study and why the reject rate was so high and I got to meet the rep from Pharnex at there vendor booth.

CapTel was a vendor I got to talk to. They provide caption phones for the hearing impaired. This tool might really help me at work since I am struggling with hearing issues at work. Finding this made the entire trip worthwhile.

I got to meet so many people  including members of the HNF board and Team CMT. Many I have only known through pictures and facebook posts. The day went to fast I did not get to talk to everyone I wanted to talk to or spend as much time as I wanted with everyone.  It is so awesome to someone and know they just get what it is like to live with CMT. No explanation needed.

It was a wonderful and exhausting day. The venue was perfect and the conference was outstanding. I cannot wait till next year.  Hope to see you there.

**********



Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 202 members in 38 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland,Iran and Sweden. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


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.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

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