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Funding announced for national centre for rare childhood disease |
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Guy’s and St Thomas’ is to become the national centre for treating children with a rare inherited disease that leaves them vulnerable to sunlight. In collaboration with the University of Sussex and Ninewells Hospital Dundee, the Trust will tackle the recessive genetic disorder Xeroderma Pigmentosa, or XP, which impairs the ability of the body to repair damage to DNA caused by ultraviolet light. It affects about 100 people in the UK and can be a very severe disease, causing skin cancers, eye problems and neurological problems such as hearing loss, learning difficulties or difficulty walking. Dr Bob Sarkany, consultant dermatologist, St John's Institute of Dermatology (Guy's and St Thomas'), led on the application to the National Specialised Services Commissioning Group – a Department of Health committee which commissions highly specialised services – to fund the centre. "Until now, it has been difficult to coordinate all the different specialists," Dr Sarkany said. "But now we can have a clinical set-up where specialists in dermatology, neurology, ophthalmology and other relevant fields can work closely together." The Trust will work with Professor Lehmann's internationally famous diagnostic laboratory service at the University of Sussex, and the photobiology unit at Ninewells Hospital, to formalise a dedicated service for patients suffering from this debilitating disease. Working together, the team will build on their expertise to provide an expert and comprehensive service for patients. The service will be based not only at the Trust in London, but around the country with the XP team working with patients and consultants wherever they are. The centre will also work with the XP Support Group, a charitable Trust founded in 1999 by the parents of a child with the disease. Sandra Webb and her husband Steve first became concerned about their son Alex when he received a sunburn through a car window at just seven weeks old. At seven months he burned in the shade and at 11 months he had his most serious burn on a holiday in Austria; on both occasions he was wearing full sun block. Sandra said: "It is a strikingly difficult way to live for a child, and for the families concerned. Alex's school has been fitted with protective film on all the windows, lights have been checked for their emission of UV light and a welfare assistant has been provided to help apply his sun cream." Alex has to wear a visor whenever he goes out to protect his skin against cancer-inducing damage from daylight. Click here to read more.... |
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XP Support Group - we need you now more than ever! |
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This year, the XP Support Group celebrated its 10th birthday and demand for our services was at an all-time high, most obviously seen in the record numbers attending Owl Patrol Camp with over 90 participants a day, up from 70 last year. Owl Patrol Camp is our most visible activity, but behind the scenes the XP Support Group has continued to provide hugely valuable support to families affected by UV light sensitivities across the UK. This year alone, we have been involved in the transition planning for several children starting or changing schools and have counselled many families and carers of children with light disorders seeking to make sense and manage their rare situation. Sadly, this year was also the first that we saw our expenditure exceed income – by around £7500 – leaving our reserves dramatically depleted at £4000. As I write, we are doing everything we can to reduce costs, but they were already tightly controlled. To avoid having to close the charity within the next year we need to raise significant funds and every little counts. The greatest challenge we face is the ever-increasing number of charities fighting for a smaller ‘pot’ of grants, which means we must become more reliant on our supporters. Fundraising activities continue and this year we plan to auction the set of signed Harry Potter Books donated to us by J K Rowling, we have the Dinner & Auction of Promises in October; and are seeking volunteers for the Hydro Active Run in September and the BUPA 10K run in London, May 2010, where we have six guaranteed places. This will help, but what we really need is sustained funding. To survive, XP Support Group must become less reliant on grants, which is why I am calling on your support to secure regular small donations that will enable us to keep helping the individuals and families affected by light sensitivity disorders. Just £5 a month, every month, donated or raised by each person who receives this letter would ensure that the infrastructure is there to provide our current services and to run the Owl Patrol Camp. We know that times are tough and we appreciate every last penny that people are able to give – so please, just send us what you can afford. If possible, if the funds are available, we dream of extending our reach: We have campaigned long and hard and finally there is the promise of an XP Clinic funded by the NHS, but we need £20,000 to fund a Family Liaison Nurse for this service. We also have the opportunity to participate in a joint International XP Conference and Retreat with the XP Family Support Group (USA) and the Freunde die Mondscheinkinder (Germany) and would like to raise £5000 to subsidise at least 10 families to attend. Clearly our budgets will determine priorities, but if everyone receiving this letter donated or fundraised £100 over the next year, we would be able to achieve all these ambitions. Please help – by supporting our fundraising events detailed in the attached newsletter or by setting up a standing order. Please see attached form. Alternatively you can make a one-off donation online here or send a cheque to us at address above. If you would like some ideas on fundraising, please contact me. Times are tough, we know that. But our children know nothing of the recession – they still need our help. Please give what you can. Regards Sandra Webb XP Support Group Registered Charity no 1075302 |
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Olly the Owl's is going around the world to raise awareness of XP. 
