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Thursday, February 18, 2016

Rare Disease Day



FOR IMMEDIATE RELEASE 
Rare Disease Advocates Raise Important Awareness at the Wisconsin Capitol  for Rare Disease Day® on February 29th, 2016. 
Madison, WI—February 29, 2016Join rare disease patients, caregivers and other health care advocates in Wisconsin to raise important awareness for rare diseases as part of Rare Disease Day® 
Speakers for the event will include legislators, patient representatives, advocacy groups, clinicians, researchers and WI biotech.  
Many important decisions related to rare diseases are made at the state level, including newborn screening; support services to help families cope with complex medical needs; an environment that promotes innovative medical research and product development; and insurance practices that assure patient access to medically-necessary therapiesThe implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the health care needs of Americans are addressed.  

The event will be held in the Assembly Parlor of the WI Capitol building 
9:30 - 10:30AM: Coffee and Social 
10:30AM – Noon: Event and presentations 

The event is organized by patient advocates who have joined with the National Organization for Rare Disorders (NORD)®a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases, and national sponsor of Rare Disease Day in the U.S., to educate and inform the public, elected officials, legislative staff and the media 
According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 AmericansOne in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are childrenThere are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatmentsMedical researchers are not studying many diseases due to limited financial resources, and therefore, this research is often funded by patient families or by patient advocacy groups. 
 Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients.. 
For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.usFor information about global activities, visit www.rarediseaseday.org)To search for information about rare diseases, visit NORD’s website, www.rarediseases.org. 
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Media contacts: 

Chris Wodke run4cmt@yahoo.com
Jennifer Huron, NORD, 203-744-0100, jhuron@rarediseases.org 

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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.  

 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 1756 members in 31 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France 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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