DebRA . is fundraising for DebRA

The Boy Whose Skin Fell Off

In memory of:
Jonny Kennedy

Jonny Kennedy

Photos (1)

oh wow, you need to have Flash player installed and javascript enabled

Raising money for

DebRA

Charity Registration No. 1084958

EB - Epidermolysis Bullosa - is a genetic condition where the skin breaks at the slightest touch, causing painful, open blisters and wounds. EB can mean a life of extreme pain, disability and, at its worst it is fatal in infancy. People with severe EB are likely to contract a fatal skin cancer. DebRA provides specialist EB nursing, funds extensive medical research and provides counselling, welfare, respite and advocacy.

Page owner

DebRA .

Page closes

31/01/2009

RSS

Raised so far: £79,012.74

Donate now

My story

Jonny agreed to make 'The Boy Whose Skin Fell Off' to make EB more widely known and to raise funds for DebRA, the only charity in the UK that provides specialist nursing and welfare for children and adults living with this painful condition.

DebRA also funds wide ranging international research projects, including EB research in genetics, cancer in EB, wound healing and pain management.

As a result of the documentary over £500,000 has already been raised. DebRA has subsequently been able to embark on a long term research programme and may only be two to three years away from clinical trials into effective treatments.

This is, however, an expensive journey and we very much need your support. Please help us make Jonny's wish come true by making a donation here.

Donating through this site is simple, fast and totally secure. It is also the most efficient way to support DebRA. DebRA will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

Thank you for reading this.

	True inspiration! Donation by Anon 17/01/09	£10.00 + £2.82 Gift Aid
	We've never forgotten you. Keep on laughing Jonny, and make the Angels smile Donation by Claire Dawson 23/12/08	£15.00 + £4.23 Gift Aid
	this programme made me realise how lucky i am but also made me want to help people who suffer from this terrible disease Donation by anon 23/12/08	£100.00 + £28.21 Gift Aid
	Hope your dream comes true for the future Donation by Jayne 22/12/08	£10.00 + £2.82 Gift Aid
	Remarkable person. Brilliant character, determined and warm souled. I wish I could have met him. Best wishes x Donation by Peter Kent 08/12/08	£20.00 + £5.64 Gift Aid
	With hope for the future Donation by Deborah 06/12/08	£10.00 + £2.82 Gift Aid
	I hope you are livening things up up there Donation by Elle 01/12/08	£15.00
	I will never forger the programme and what you said Donation by Alyn 28/11/08	£10.00 + £2.82 Gift Aid
	His legacy will help so many others Donation by John & Fay Inverness 24/11/08	£25.00 + £7.05 Gift Aid
	A truly inspirational man & a real star!!! Donation by Sharoony 04/11/08	£5.00 + £1.41 Gift Aid
	I never forgot the programme and whenever I hear Queen playing I immediately think of Jonny. - an amazing man. Laughter and tears. Donation by Janette 01/11/08	£25.00 + £7.05 Gift Aid
	Thank you for being such an inspiration. Don`t stop me now ! Glide on forever Jonny, love ya. Donation by Carole Smith. Rugby. 05/10/08	£10.00 + £2.82 Gift Aid
	God bless you Donation by Annonymous 26/09/08	£100.00 + £28.21 Gift Aid
	In memoriam Donation by Pilar (from Spain) 22/09/08	£10.00
	My support for a life free of pain Donation by Carme 20/09/08	£80.00
	What a great man... 100% Strenght Donation by From Catalunya 20/09/08	£20.00
	What a brave man, he made me feel so humble Donation by Sylvia 20/09/08	£10.00
	Nothing's gonna stop you now, Jonny Donation by From Spain 20/09/08	£100.00
	Truly an inspiration. God bless Jonny and all his family Donation by Anonymous 07/09/08	£10.00
	Whenever i hear the Queen song I smile and think of Johhny, he was an inspiration x Donation by michelle stewart 23/08/08	£20.00 + £5.64 Gift Aid
	Jonny was an awesome human being, he made me want to make a difference so I did a raffle at school a Donation by Libby Smith 30/06/08	£25.00
	Brave man. Donation by Antony 30/06/08	£10.00
	I never cherished the life I lived, until I saw Jonny smile. Thank you. Donation by Jade Daniels 23/06/08	£10.00
	Donation by rosanna 20/06/08	£10.00 + £2.82 Gift Aid
	Lots of love, champion! xxx Donation by Tim Peacock 10/06/08	£50.00
	Hoping that this will help. God bless Jonny. In memory of a very brave man. Donation by Kath 09/06/08	£50.00 + £14.10 Gift Aid
	a donation after a girly night at home! Donation by kate tw 13/05/08	£40.00 + £11.28 Gift Aid
	Keep those donations coming in - they are really appreciated Donation by Durham Wedding Cars 06/05/08	£100.00
	wonderful person, great job jonny! Donation by david goepfert 05/05/08	£10.00
	What a wonderful person, an inspiration to us all, whenever I hear that Queen track I think of Jonny. Donation by Jo Potter 02/05/08	£10.00 + £2.82 Gift Aid

Donate now

* Total raised online:	£79,012.74
Offline donations:	£0.00
Gift Aid plus supplement:	£16,441.34

* Charities pay a small fee for our service.
Find out how much it is and what we do for it.