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Saturday, June 4, 2016

CMT Patient Conference



I got an un-expected surprise this week.   I received an invitation to be part of a panel on exercise and nutrition at the CMT patient conference in New York this October.  I really excited to meet so many members of Team CMT and the CMT community.  Here are the details about the conference.


Cost

$25 for patient and caregivers until June 15th
$35 after June 15th

Location

New York City
October 6, 2016
3 West Club,  3W 51st St.


Patient-Centered Charcot-Marie-Tooth Summit
The goal of the Patient-Centered Charcot-Marie-Tooth Summit will be to expand the role of patients, caregivers and other stakeholders to identify patient-centered measurement tools that are fundamental to research and clinical practice by conducting workshops and panels led by patients and stakeholders. Patients will have the chance to hear the latest in research developments, participate in panel discussions with clinicians, and voice their needs and priorities in regards to CMT research and treatments.
The Summit will be focused on innovative content and bring together top leaders in industry, research, and treatment and give a voice to the patient.
The objectives will be to:
  • Educate the participants on the state-of-the-art PCOR regarding Inherited Peripheral Neuropathies (IPNs)
  • Serve as a forum for exchange of ideas particularly as they relate to patient outcomes and barriers to implementation
  • Illuminate the critical role that patient involvement and PCOR has for advancing IPN understanding and treatment
  • Foster development of partnerships between researchers and patients
  • Posters and presentations will describe key science performed in field 
  • Impactful presentations on innovative technology, public policy, and the importance of disease-state awareness to support PCOR and partnerships
We encourage all CMT patients and stakeholders to attend what is surely to be a landmark event.

**********

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 has qualified to represent Team USA at the Aquathon ITU World Championship in Chicago in 2015 and 2016

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

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 194 members in 36 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland and Iran. 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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