Music Event to Raise Awareness and Money for Netherton Syndrome Research
Welcome to the Netherton Syndrome Group Website
This website has been produced because of Jack Oldacres who was born with the condition. His family want to help raise awareness of his condition, and over the last 2 years since the site has been set up we have grown our base of followers and friends to nearly 1000 facebook members.
We have friends from America to Australia, Nuneaton to Las Vegas. The things this site has achieved are way beyond what we set out to do and the Facebook page has brought people with the condition closer together. Please have a look around at the different pages, with information on how Jack coped in his early few month's and his daily routine - his cream and medicine he used and is using.
There are pages with all the events our Jack and his friends have been upto, from Uniparts Got Talent to the Nuneaton Carnival Walk. Everyone has been busy helping raise funds and awareness.
We have a profile page on some of our friends who are involved in helping raise awareness and living with the condition.
And without the help of some kind hearted people and companies who give up their time and money to raise much needed funds and donation's we wouldnt be here we have set up a page to thank them for their kindness.
Netherton Syndrome Awareness are not a registered charity all our efforts and events we run are for a charity called the Ichthyosis Support Group they are a collective skin condition group which covers Nethertons and other simular conditions, so we really wanted to work with them to raise as much money to help with the research and support to people in the same position as Jack.
Please have a look at the website and see some of the things that the ISG are upto.