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Netsite re-designs website for charity that helps their son
Date: 13th September 2013
The founders of Netsite have shown their gratitude to the charity that has helped them and their son cope with his rare condition by redesigning their website. Paul and Kathy Duthoit, have donated services worth approximately £7,000 to create a new website for The Ann Conroy Trust. The charity is desperately trying to raise awareness of a rare disease called Chiari Malformation, also known as Hindbrain Hernia, and needed a new site to help its campaigns.
"We are so grateful to The Ann Conroy Trust for the support they have given to us as parents and to our son Mark that we decided to help in the best way we can. It's so important for charities to have professional and dynamic websites and this charity really needed our expertise," explained Paul.
Mark, now age 37, was diagnosed with Chiari Malformation when he was 26. Mark's birth was a very difficult breech delivery with hypoxia. Throughout his childhood, Mark had coordination and balance difficulties. He also had a slightly larger head than normal. This probably pointed towards the early development of hydrocephalus. This was not detected until a bad fall in 2002 lead to neurological examination.
The diagnosis was Chiari type 1. Mark required posterior fossa decompression surgery. At the same time a shunt was also inserted which subsequently had be removed due to MRSA infection. Mark spent a very long time in ICU at King's College Hospital and recovered well afterwards. By 2005 his symptoms returned which necessitated a second decompression surgery.
Since then he has shown good recovery although now, having active hydrocephalus means he will require a further operation called an endoscopic third ventriculostomy. Paul and Kathy are hopeful that Mark will have this surgery in October this year.
Chair of the Ann Conroy Trust Lynn Burton said: "We are absolutely thrilled with the new website and it is going to play a vital role in helping us to communicate what is a complex and often misdiagnosed condition."
"There is still a huge lack of awareness, Chiari Malformation and Syringomyelia are medical conditions that are often dismissed or misdiagnosed by medical professionals because they haven't had the training to identify the symptoms correctly. It's also a complex condition as symptoms can differ. Mark's problems, for instance, aren't typical. Everyone is very grateful to Netsite and the team."
The new website incorporates Concrete5, an easy-to-use, open source content management system (CMS) that enables users to edit site content and add images directly from the page. Concrete5's world-wide developer community means that new features and plugins are being added all the time. This means that Netsite can keep the charity's website technology up to date and add new facilities as required. The charity will shortly be adding ecommerce to generate additional revenue. Already included is a members' only area and a direct link to the charity's Just Giving page to encourage people to make donations and see who else is raising money.
The Ann Conroy Trust (ACT) was established in 1980 by Ann Conroy, a Syringomyelia victim, to help others with the condition and their carers. Raising funds to enable research into the condition of Syringomyelia, Chiari Malformation and its associated conditions was very important to Ann.
The Charity is the only organisation in the UK providing educational material about Syringomyelia and Chiari Malformation. It funds research work and provides a national helpline and support network which includes qualified support counsellors for those living with the conditions. Where possible, The Ann Conroy Trust puts those living with conditions in touch with each other so they may get together to support each other. Raising funds to expand its research programme and funding for training days for medical professionals is a top priority of the trust.