Welcome to the Netherton Syndrome Awareness WebsiteThis website has been produced because of little Jack Oldacres who was born with the condition. His Family want to help raise awareness of this contition and with the help of this site, we hope people can understand how life is with the condition and also help those who are affected. This site will chart the progress of Jack as he grows up with Nethertons his routines hospital visits and charity events we and jack get involved with. The group are helping raise money to fund research into the condition and hopefully in the long term a cure for Nethertons. So please feel free to have a look around our few pages with photo's and blogs with things we are all getting upto. ******Top News****** Massive day 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.
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. |
||||||||
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.
