This year I will be doing several events to raise awareness and money for Rett Syndrome.

Rett Syndrome is a Neurological developmental disorder that is almost exclusively found in seemingly healthy girls. I first became aware of this charity a few months ago after the passing of my beloved grandad Ted. The collection at his funeral was for Rett Syndrome,as Ted had followed the heroic fund raising events of my Uncle Lawrence’s good friend Neil Fowler who's little daughter Ciara has Rett.

Lawrence has been there to support Neil in this fundraising over the last few years which have seen Neil cycle the coast to coast in 2012 then followed by a Home to Rome Challenge in 2013 which consisted of Neil and friend Sion Owen setting off from home and cycling across Europe to finish in Rome supported by Lawrence, Colin Mcloughlin and John Owen. If that wasn't a big enough challenge, this year Team Ciara, consisting of Neil Fowler, Sion Owen and Michael Banner (cyclists) and Lawrence Holland and Colin Mcloughlin (Support crew) are attempting the 14:14:14 which is 14 counties in 14 days in 2014 all on a bike!

These guys have really inspired me to get involved as much as I can so this year I will be aiming  to raise as much money as possible doing the "Cheshire Cat" a 70 mile cycling sportive in March, followed by the Chester Half Marathon in May, the Tour de Yorkshire a 120mile cycling sportive in July and then stepping up the training to hopefully complete my first ever full distance marathon in October in Chester.

I will also be trying to help Team Ciara's promotional campaign by producing professional team portraits and following them on their training rides on the run up to 14:14:14.
 
Please take the time to read more about Rett Syndrome.

It is caused by a totally random genetic mutation at the point of conception. It is not hereditary and therefore can potentially affect any girl. With Rett Syndrome,developmental delay is common and girls will often go through a period of regression, where they lose skills that they had developed, such as crawling, walking, talking, feeding and use of their hands. Breathing difficulties, digestive problems,incontinence, disrupted sleep patterns, seizures, impaired cardiovascular function and sudden unexplained death are also associated with Rett Syndrome. It is often described as having the symptoms of Cerebral Palsy, Epilepsy, Parkinsons and anxiety disorders all in one little girl. As things stand there is no treatment or cure for Rett Syndrome. Life expectancy is significantly reduced and Neil’s daughter Ciara, along with all others girls, face the prospect of a life in a wheelchair and 24 hour 1:1 care. There is the likelihood that she will require tube feeding in the future and due to having low muscle tone will develop a spinal curvature (Scoliosis) which would have a detrimental effect on her ability to breath. Ciara already has a partially collapsed lung. Relatively few people have heard of Rett Syndrome. It may be a relatively rare condition, but it is no less prevalent than Cystic Fibrosis, a condition that most people will at least have heard of. What girls with Rett Syndrome go through on a daily basis takes courage and bravery to another level. Ciara and these girls are just such amazing and inspirational people.
 
In 1999 scientists had discovered that Rett Syndrome is a single gene disorder and they discovered exactly which gene was at fault (the MeCP2 gene). This gene has a crucial role in the control of overall brain function. The fact that it is a single gene disorder lends itself to the potential for discovering treatments and/or a cure in 2007 scientists (Professor Adrian Bird and his team at Edinburgh University) carried out an experiment using a mouse model and discovered that by replacing the missing proteins on the faulty gene, all symptoms were reversed and Rett Syndrome appeared cured, albeit in a mouse. From this point, the potential for a cure for girls with Rett Syndrome became a very real prospect. As promising as the research is, everything as usual comes down to money. The rate at which the research trials can move from animals to humans and then on to effective treatments and ultimately a cure, is directly related to the amount of available research funds.
 
Reverse Rett donates all money raised to fund this vital research. It is for this reason that I wholeheartedly support this charity.
Human trials have now started! Professor Adrian Bird (as mentioned above) was this year nominated for the Nobel Prize for Science and he has just received a Knighthood in the New Years Honours List, both in recognition of his achievements and the subsequent potential for curing Rett Syndrome. Hopefully, people can see that we are not naively hoping against hope for something that will never happen. The prospect of a cure is very tangible.........but for Ciara and all other girls suffering with Rett Syndrome, it is literally a race against time!
It won’t be long until parents can be told by Doctors, “Your daughter has Rett Syndrome and  this is how we cure it”.