Some 16 months ago, our friends Jenny and Paul's 20 day old son Blake, was diagnosed with MeCP2 Duplication Syndrome.  This is very rare genetic disorder, that so far very little is known about.

MeCP2 Duplication Syndrome is a condition that occurs almost exclusively in males and is characterised by moderate to severe intellectual disabilty. Most people with this condition also have weak muscle tone in infancy, feeding difficulties, poor or absent speech, epilepsy, which is very poorly controlled, and muscle stiffness (spasticity). Individuals with MeCP2 Duplication Syndrome have delayed development of motor skills such as sitting and walking. Many cannot walk at all. Many individuals with this condition suffer from severe recurrent respiratort tract infections, often leading to pneumonia. This is a major cause of death in affected individuals, with almost half succumbing by age of 25.

Many people have been raising money in Blake's name to help fund research into MeCP2 Duplication Syndrome, and recently it was announced that funding had been secured to at least start this research.  I thought that I could use this years Lap of the Lough to help ensure that the research continues.

So, if I can get up off my backside, brave the elements on an 87 mile cycle around Lough Neagh and the associated plague of flies and other winged beasties, the least that each of you can do is press the donate button, and type in your bank card details!  I have even roped in some of my friends and coleagues for support, and you should see the hack of them!

The Only Way Is Lycra!

I am also raising money for the Make A Wish Foundation, which makes wishes come true to some very deserving children thoughout UK and Ireland.  You can donate here: http://www.justgiving.com/Alan-Pollock2