Tagged CDKL5

CDKL5

Charity of the Month – June 2013 – CDKL5

CDKL5 The Frame USA charity of the month for June is CDKL5 — Even though people have been studying the human body and medicine since man discovered fire, there are still many things we do not know about the body.  CDKL5 is a genetic disorder that affects the X-chromosome, one of the sex chromosomes, girls have 2 Xs and boys have 1X and 1Y.  This does not only affect girls, but boys as well, however it does seem more prevalent in females.  This genetic mutation results in early onset and difficult to control seizures and severe neuro-developmental impairment.  The CDKL5 gene controls provide instruction for making a protein that is essential for normal brain development.  This leaves children unable to walk, confined to wheel chairs, unable to talk or feed themselves and have to depend on others for everything they need.  They also may have scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties.  There is no known cause of CDKL5, however they do believe that it is not hereditary and occur spontaneously. This is a newly discovered disorder (2004) and they do not have all the answers about life expectancy, how and the ability to treat, and all symptoms associated with the disorder.  The International Foundation for CDKL5 Research is aggressively seeking to inform the public, create a database, and start clinical trials as soon as possible.  The first CDKL5 Center of Excellence in the US opened in Colorado in April 2013.  For more information and stories of these brave children and families, please visit www.cdkl5.com.

Remember, for every picture frame purchase made on FrameUSA.com in the month of June, we will donate $1.00 to CDKL5. At checkout you have the option to match our $1.00 donation. We encourage everyone to pledge $1.00 to help this amazing organization. Thank you! Donate at checkout