Researchers are accepting 300 patients for the trial. There will be 28 trial sites in the United States ( California, Conneticut, Massachusetts, Minnesota, Missouri, New York and Washington) and Europe (France, Germany, United Kingdon, Spain, Netherlands and Belgium).
The trail will be examining if PXT 3003 is effective and well tolerated for those with CMT type 1A.
PXT 3003 is a blend of three different drugs whose aim is to reduce levels of the PMP 22 protein.
This is the protein that damages the nerve sheath. It is hoped the trail will show it stops or slows progression of the diaese.
Participants may be male or female, 16 to 65 years old with a proven genetic diagnosis of CMT 1A.
To learn more about the trail and additional requirements, visit ClinicalTrails.gov and enter NCT02579759 into the search box.
This is the news we have been waiting for. We have waited for any hope of a treatment for CMT.
*****************
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 TeamUSA 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 was the PC Open Champion at the Duathlon National Championship. She represented 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 196 members in 37 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
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Marathon Bombing
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