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, 2016—Join 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 therapies. The 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 Americans. One in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments. Medical 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.us. For 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
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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 TeamUSA
at the Aquathon ITU World Championship in Chicago
in 2015.
In 2014 she was the PC Open Champion at the Duathlon National Championship. She has qualified to represent Team
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.
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
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Marathon Bombing
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