Our son Josh is four and has been diagnosed with the very rare syndrome FoxG1. The syndrome is relatively new so little is known. But it is severe and has several symptoms that are common with all cases: microcephly (small head), agenisis of the corpus callosum (missing the bundle of fibres that connects the two hemispheres of the brain), visual impairment, seizures, feeding difficulties, weight gain issues, sleep problems, lack of speech and the lack of ability to sit or walk independently

In 2012 the International FoxG1 Foundation was formed with the aim to promote awareness, provide support and promote research. We are growing all the time and we now have over 80 children registered with us.

We have doctors ( Dr Neul, Dr Renieri and Dr Paciorkowski) who are willing to start research and hopefully provide some better understanding of this condition, with the hope of finding a cure one day! The foundation is trying to raise the funds necessary to start the research. We have an initial target of raising 80,000 dollars.

We would like to raise money to help fund this much needed research and are doing several fundraising things. Josh's dad is running the Liverpool half marathon on 23rd March 2014 and we would welcome any donation!