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Fundraising
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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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Sponsor a child to go to camp! |
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Looking for an unusual birthday or Christmas present? This year the XP Support Group is promoting an alternative birthday or Christmas present. We are asking you to help sponsor a child to attend one of the night time camps, It costs £350 to send a child to Owl Patrol, £2,500 to send a family to camp in the USA or £500 to send a child to France or Germany.
You can sponsor a child from as little as £10. You will receive a CD of a recording of the "Bear Necessities" made by the children, parents volunteers at the Owl Patrol 2007. In 2010, we are planning to hold an
International XP Camp in conjunction with the XP Family Support Group (USA), XP Freunde die Mondscheinkinder (Germany) and Enfants de la Lune (France). To ensure as many families as possible are able to attend, we will need to raise at least £20,000.
You can sponsor a child at www.xpsupportgroup.workwithus.org
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Today we launch an appeal to fund a specialist nurse for XP and light sensitive patients to act a Liaison Officer between all the services that affect an XP patient. This nurse will also be a clinical nurse who would be available at the XP Clinic held at St John’s Institute. We are actively seeking funding from outside Organisations but we are also looking for you to help. If you would like to make a donation , please send a cheque to made payable to the XP Support Group or donate on-line at www.xpsupportgroup.org.uk and quote “Nurse Appeal”. |
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Walk by the Light of the Moon - 10 November 2007
Our thanks to those who walked from Tower Bridge to the London Eye on a cold November night to raise money and awareness for the support group.
London Marathon 2008 - 12 April 2008
Graeme Akhurst completed the London Marathon on our behalf and has raised 1575. Graham’s brother has XP and we are delighted that has done this for us.
Please visit his sponsor site on-line here
John O'Groats to Lands End - 9 June 2008
Congratulations to Tom Simmonds XP patient aged 10, who rode pillion with his Dad from John O'Groats To Lands End (850 Miles) in 21 and half hours. Tom says “we rode 1974 miles in 76 ours. It was an amazing experience and the scenery in Scotland was fantastic”. Tom has so far raised £522 on our behalf.
Comrades Marathon 2008 - 9 June 2008
Congratulations and thanks to Martin White & Uschi Mehnart of Elga Lab Water in Lane End who completed
the Comrades Marathon in South Africa. This is an Ultra Marathon and covers a distance of 56 miles. Martin and schi have raised £1400 for the XP Support Group.
Please see their blogspot here.
The Newark Half Marathon— 10 August 2008
Gary Wilkinson will be raising money for the XP Support Group and newly diagnosed Alice Tyson, recently seen on BBC and GMTV. The money that Gary raises will be shared equally, so far Gary has raised £1600
Adidas Women's challenge - Sunday 7 September 2008
Once again, we are inviting women to volunteer for the 5 km run in Hyde Park London. Applications can be made at www.womenschallenge.co.uk or a cheque for £15 can be sent to the XP Support Group.
Last year Sandra & Holly Webb, Cynthia and Kaisha Brown, Carole
Hazlehurst, Catherine Calow, Sarah Ellis, Jo Coles, Sue Sexton and Meg
Armstrong who raised £825.
www.womenschallenge.co.uk
Becky's sponsored slim
Many of you know Becky as one of our Owl Patrol Volunteers, she is doing a sponsored slim to raise money for our group. Here are her words as to why she is doing this. "I thought this would give me motivation to lose weight before next camp, as believe it or not in my first year as a volunteer I was 5 stone lighter."
Help support me by donating on line here
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Thank you to all of you who sent donations over the last six months we would like to say a particular thanks to the following:
- Chudleigh Fundraisers who raised money to send the Ridings Family to Camp Sundown the balance of £1500 was donated to the group and to pay for the Ridings Expenses in New York.
- High Wycombe Lions who donated £150 from their Christmas Float collection, as well as a Nintendo Wii, TV and DVD player for the wl Patrol.
- Beckman Coulter for £75 from their dress down day.
- St. Leonard’s Ladies Fellowship for £253 raised at their Summer Fete.
- Gifford Ltd for £250.
- Boyz to Men hairdresser from Prestwood who raised £56 with their Christmas collection.
- The Quad Club, Marlow for £375.
- Multichem Ltd for their £100 donation which they have sent to us every Christmas for many years.
- Ally Fraser who has so far raised £300 from her Reiki sessions. The money will be used to put DermaGard on her car, so that we will have another protected car available at Owl Patrol and other events.
Past Donors include
- * Carl Edwards who raised £1030. Carl raced along stage 15 of the Tour de
France from Foix to Loudonville. Carl covered the 121 miles in 11 hours
and 10 minutes. Of the 4500 who finished the race Carl came in at 3499.
Congratulations on a great achievement.
- * Prestwood
Infant School who raised £280 . We send our special thanks as Prestwood
Infant school have continued to support us over the 9 years of our
existence.
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*The London Law Trust, awarded a grant of 2,500 towards the 2005 Owl Patrol Camp.
- *Jeans for Genes 2006
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* High Wycombe Lions for £100 to buy sun cream for Yuni and Bexy from Cuba.
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* The sun cream was presented to Yuni and Bexy at the Owl Patrol Camp by their President, Mrs Pam Nower.
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* The Parishioners of Little Hampden Church for£140 donated at their annual Carol Service.
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* The Colleagues of Mrs Harj Dhaliwal for £300 raised at a charity Dinner.
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* The Children of Prestwood Infant School who raised £137 with their Christmas Bauble Fund. Instead of giving Christmas presents to their teachers the children gave a donation in exchange for a Christmas bauble which was hung on a tree.
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* Maria Gardiner and friends who for the second year held a family New Years Party and raised £79
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* Silver Fox Bowling Club raised £102!
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* The Syndicate of Wolverhampton held a Black Tie Ball at the Park Hall Hotel, Wolverhampton. Proceeds from the charity raffle raised £470. Our thanks to Rodney and Molly Dillon.
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* British Airways for £200 from their "Change for Good" programme.
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* 1st Prestwood Scout Group for £30 donated at their annual Carol Service
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* Friends of the Gateway School, Great Missenden who raised £1,500 to provide us with a bouncy castle and trampoline for use at our meetings and the Owl Patrol camp. The Bouncy castle will have its first outing at the Barbecue and Fireworks night on 8 November
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* Poynton High School Year 7 who raised £66.
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