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.
Massive news for Nethertons Syndrome as cheque is handed over to the Doctors
A NATIONWIDE fund into the research of a rare skin condition has been set-up in the name of a Nuneaton youngster.
Danny and Julie Oldacres could not be more proud or grateful after finally achieving their dream - of ensuring that the condition suffered by their son, Jack, is officially recognised and researched.
It was 18 months ago when the couple from Stockingford starting their mission to raise funds into research of Netherton syndrome, the painful skin condition that the three-year-old has suffered from since birth.
They joined forces with the Ichthyosis Support Group, which looks into the research of many skin conditions, to launch their appeal.
With the help of an army of volunteers and supporters, plus many acts of kindness and generosity, the pair were able to hand over a cheque for just under £15,000 to the University College London, which is closely associated to Great Ormond Street Hospital.
If that was not achievement enough, the couple, who travelled down to the capital with Jack, were told that a dedicated fund will now be set up specifically for research into Nethertons.
"This is something we have forced them to do , Nethertons wasn't recognised before and thanks to all of the hard work of not just ourselves, but all the many people who have supported us, we have done this," Danny said.
"We have fought so hard for the last 18 months, people have seen us in the papers week in, week out, but this has been the driving force behind everything we have done to get a fund set-up specifically for Netherton research, now there is one at the University College London.
"This will help families across the country who have children with Nethertons."
Following their trip to the college, which included a tour of the laboratories, the couple were keen to express their thanks to everyone who has helped their cause over the past year and a half.
"We are so proud, all of the hard work has paid off but we could not have done this without the fantastic support we have had from the people of the town, the £14,220.58p is all done to them," the Royal Mail manager added.
"When we first started this, we hoped to get a fund especially for Netherton but we never thought we would do it so quickly, and again, we couldn't have done this without the support we have had, it has been overwhelming. We could not have done this without them and we are so grateful.
But the family are determined to carry on: "Because Nethertons is so rare, we need to keep fundraising into the research and raising its profile," Danny added.
"We have come so far but we have got to carry on, and we hope that people will continue to support us."
In fact, the next fundraiser will be a ladies zumbathon at Velvet nightclub in Nuneaton town centre on Wednesday, December 7
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.