The March 2007 Newsletter is here

Click here for the March 2007 Newsletter

Sunsibility

SunSibility individually manufacture sun protective clothing for children & adults.

All clothing has a built in SPF 50 and the company can double the fabric on most designs to offer a higher protection. Gloves, Socks, Tracksuits and Face Protection are all available along with a selection of High Factor Sun Creams & complimenting accessories" People can also design there own adding Vinyl Print, Embroidery and Diamante to make their outfits a little more Unique !

More details at: http://www.sunsibility.co.uk/

Suninsight.com

This company offers hats for children and some adult clothing suitable for XP patients.

They plan to introduce more long sleeved clothes and trousers for children and adults in the New Year.

You can also purchase SunGard wash in UV protection.

XP Support Group members can receive a 10% discount on their orders by quoting XXPSG0607 at the checkout.

Suninsight Limited

www.suninsight.com

The October 2006 Newsletter is here!

Please find attached the October Newsletter. Please note the application form for Owl Patrol 2007 is enclosed.

Regards

Sandra Webb

Jeans for Genes 2006 - Friday 6th October 2006!

The XP Support Group has been selected as a guest charity for the 2006 Jeans for Genes (J4G) Appeal. It is an annual national appeal to everyone to wear jeans or denim for one day instead of their normal uniform or working clothes. As it is always on a Friday it means a fun day and a change from the norm for most people who go to work or school in smart clothes. Everyone who puts on their jeans is asked to donate to the appeal - £1 for schoolchildren, and £2 for those taking part at work.

This year the date is Friday 6th October 2006, and this year’s theme is Dress to Impress and make an impression on a child’s life – so it isn’t just jeans but it should be denim.

So why does J4G need to raise money? One child in 33 in the UK is born with a genetic
disorder. We all probably know someone who is affected but many genetic disorders,
including XP and other light sensitive conditions, currently have no cure. This situation will not change without the money raised by appeals like J4G. The money is used in two ways; to fund much needed research projects, and secondly, to support affected families through day-to-day services, counselling and advice, local clinics, respite care, away days and specialist nurses. In the case of the XP Support Group J4G want to help us to provide more and better counselling to families and also with running our support effort.

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