On August 28th I am shaving my hair for charity at party on the park. The hair will be donated to make a wig and the money raised will go to zellweger uk and epilepsy society.

Here's a little information from the Zellweger site. It is a reasonably new charity and a condition that I am only aware of due to my friends son having it so I would imagine many of you are also unaware too.

Zellweger Spectrum Disorder, otherwise known as GPD (Generalised Peroxisomal Disorder), is a very rare genetic condition belonging to a group of diseases called Peroxisomal Biogensis Disorder (PBD). Most children don’t live into adulthood and deal with global developmental delays, deaf-blindness/multi-sensory loss and a plethora of other health issues. Life with Zellweger Spectrum Disorder can feel incredibly lonely. Most doctors and paediatricians have never even heard of Peroxisomal Disorders, so specialists experienced in the condition are very few and far between.

Zellweger UK is made up of a team of volunteers; parents, family and friends of affected children. Our aim is to offer emotional support and provide financial support to families in the way of small grants towards non state funded equipment.
Crucially, we are looking to help fund research into desperately needed, effective treatments, of which currently there are none. We hope, eventually, for a future free of ZSD. There is some exciting research currently being undertaken by dedicated scientists, but this type of research takes time and is costly. Peroxisomal Disorder is rare and therefore receives little funding towards research. Sometimes the needs of a few has to be as important as the needs of many, and our hope is that through research into lesser known conditions exciting discoveries can be made that could benefit many other conditions too. Your support is vital in enabling us to help fund.

https://www.facebook.com/zellwegeruk/

http://www.zellweger.org.uk

https://www.facebook.com/EpilepsySociety/