It is alway great when we have a success. Today I was informed my story submission was accepted and my story will be shared some time during the month of Febrary on the Global Genes Facebook site.
This is part of their effort leading up to World Rare Disease Day on February 29th.
You too can be part of this effort.
Patient Stories of
Hope and Inspiration -
Get Involved! Share Your Story!
RAREProject/Global Genes Project will be co-promoting
a ‘patient story of inspiration and hope’ every day in the month of
February 2012, in support of World Rare Disease Day.
a ‘patient story of inspiration and hope’ every day in the month of
February 2012, in support of World Rare Disease Day.
Submissions are being accepted December 1, 2011 – January 15, 2012.
Stories should be limited to 3 paragraphs and please provide a photograph for us to include. As a thank you for your participation, we will send you our new CARE ABOUT RARE jeans ribbon car sticker!
It is such an important time for us to come together as a community.To enter via Facebook, please "like" our page first and
then the submission form will appear below.
Alternatively, you may send your submission to info@rareproject.org.
Free car sticker available to those who submit their address with entry.
It is such an important time for us to come together as a community.To enter via Facebook, please "like" our page first and
then the submission form will appear below.
Alternatively, you may send your submission to info@rareproject.org.
Free car sticker available to those who submit their address with entry.
Submit your story at the Global Genes Project Facebook site.
Manager Team CMT
http://www.run4cmt.com/
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.
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.
Running, triathlons, impaired athlete, paratriathlon, USAT, running and CMT
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