My story

Thanks for taking the time to visit my JustGiving page.

I am the Rambling Duck and love to waddle and quack out to make a difference to improve lives of those less fortunate than me. For 2013 I shall be fluttering as Debra the Butterfly instead! The Butterfly is the logo of the charity DEBRA.

Through 2013 I shall be running and walking 2013 miles. Follow me on Twitter and to keep up to date. I also blog daily!

Help me raise £2013 for DEBRa in 2013

DEBRA is the national charity working on behalf of people in the UK with the genetic skin blistering condition Epidermolysis Bullosa (EB).

What is EB?

Epidermolysis Bullosa (EB) is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds.

EB is likely to affect 1 in 17,000 live births and it is estimated that there are currently 5,000 people with the condition in the UK. Because EB is an inherited condition (it cannot be caught), which is passed on genetically from parents to children, first time parents often do not know that they are carriers and will have no prior warning that the child will be affected, until birth.

The condition has a number of distinct forms. In its least severe forms, the blistering is confined to the hands and feet making holding things and walking extremely painful. In more severe forms all the body is affected and the wounds heal very slowly, giving rise to scarring, physical deformity and significant disability.

For many affected by the condition, the blistering is not limited to the skin but also affects the inner body linings such as the mouth and oesophagus. The eating of solids is, in these cases, almost impossible, and the disposal of the body waste incredibly painful. When this condition applies, malnutrition is often a consequence, further reducing the body's resistance to infection.

People with the more severe types of EB also have an exceptionally high risk of developing skin cancers, shortening their lives by approximately 30-40 years. In its most severe form, the condition is fatal in infancy.

Whilst considerable progress has been made in recent years in understanding EB and identifying the genes that cause the condition, there is as yet no effective treatment or a cure.


The condition was brought to public attention in the UK through the Channel 4 documentary The Boy Whose Skin Fell Off, chronicling the life and death of Jonny Kennedy, an English man with EB.

"Butterfly Children" is a term often used to describe younger patients because the skin is said to be as fragile as a butterfly’s wings. Hence the charity emblems with Butterflies.

Living with EB is a painful and disabling way of life. Have a look at these videos to experience this. Read the real life stories of how families and patients cope. The pictures and stories are very moving, and makes you realise how lucky we are.

I am quite passionate about wanting to make a difference. It's not just a job, it's also in my nature as you will see from the many Daily Rambles(blogs)  and fundraising events. It is not just empathy and sympathy that have tugged at my heart strings to want to be able to raise awareness of this skin condition, to raise funds for the support and research. When you can see the difference your donations make you will understand what inspires and motivates me to be a part of DEBRA and champion their research, work and organisation. A few pounds could buy mittens to stop a baby scratching and blistering themselves to the bone. £150 could send a family to a specially adapted holiday home for a much needed break. Your donation brings relief, much needed support and also closer to the research goals to find a cure. This leaflet demonstrates further how DEBRA help.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.

My gallery 8

My updates 14

It is only 6 weeks until my first 24 hour solo! On the 8th June I shall run/walking non stop for DEBRA at www.endure24.co.uk

24/04/13 13:22

It is only 2 weeks away until the Yorkshire 3 Peaks! I shall be doing this in under 12 hours on 4th May!

24/04/13 13:21

White Horse Trail Chaser, 19th January, 2013. 39 miles in under 12 hours! snow is forecast! this will sort the Yetis from the Ducks!

17/01/13 22:28

Paul McKee, myself & a few others are doing the Yorkshire 3 Peaks in under 12 hours. 4th May, 2013. 25 miles but not flat or straight! A tough challenge so dig deep please!

17/01/13 22:26

Leslie Bird of The Star Is You is making donations throughout 2013 from sales of his children's CDs and other gifts! Thank you quacks for making a difference to improve the lives of those with EB!

17/01/13 22:18

My Teams

My company

My charity

DEBRA

DEBRA

Charity Registration No. 1084958

DEBRA helps families affected by EB (Epidermolysis Bullosa), a genetic condition which causes the skin to blister and shear at the slightest friction. DEBRA provides a team of nurses and social care staff to work with families affected by EB and commissions world-leading research into the condition.

Donations 27

text donation

Donation by Anonymous on 23/05/13

£3.00

text donation

Donation by Anonymous on 23/05/13

£3.00

+ £0.75 Gift Aid

text donation

Donation by Anonymous on 23/05/13

£3.00

+ £0.75 Gift Aid

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Well done Janine, dont fall in with the quacks!

Donation by Adam Buttery on 23/05/13

£3.00

+ £0.75 Gift Aid

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Hope you enjoyed the walk, well done :)

Donation by Yvonne Cutts on 08/05/13

£10.00

+ £2.50 Gift Aid

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Well done Paul.

Donation by Grant McCarthy on 08/05/13

£10.00

+ £2.50 Gift Aid

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Go get em Paul...

Donation by Veg Crowley on 04/05/13

Great Challenge - well done

Donation by Barry O'Mahony on 03/05/13

£10.00

+ £2.50 Gift Aid

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My Friend Linda gave me a tenner but doesnt do computers so here it is

Donation by Linda on 02/05/13

£10.00

+ £2.50 Gift Aid

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Good luck Paul!!

Donation by Nikki Circou on 02/05/13

£10.00

+ £2.50 Gift Aid

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All the best Janine, the 3 Peaks is a great challenge and one I'd love to do. Make sure you take plenty of pics!

Donation by Mike Wells (mikew30) on 02/05/13

£10.00

+ £2.50 Gift Aid

Donation by Malcolm Mason on 02/05/13

£4.00

+ £1.00 Gift Aid

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Well done on all your hard work Janine and your ability to make me smile when I read your updates.

Donation by Estelle Clarke on 18/04/13

£10.00

+ £2.50 Gift Aid

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Well done on all the good work Janine and good to see you yesterday. Kind regards, Mary

Donation by mary CARTER on 04/04/13

£10.00

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Donation by Anonymous on 17/03/13

£10.00

+ £2.50 Gift Aid

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Another step in the right direction......

Donation by Paul McKee on 28/02/13

£20.00

+ £5.00 Gift Aid

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Good luck with your challenge! You're doing great things - raising money, awareness and encouraging others. :-) x

Donation by Estelle Clarke on 23/02/13

£10.00

+ £2.50 Gift Aid

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4 more donations of 50p each from TheStarIsYou customers. Happy New Year!

Donation by TheStarIsYou on 30/01/13

£2.00

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Good luck with the challenge!

Donation by Mhairi-Anne Manning on 24/01/13

£10.00

+ £2.50 Gift Aid

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6 more donations of 50p each from TheStarIsYou customers. Good luck.

Donation by TheStarIsYou Limited on 28/11/12

£3.00

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The Big Big Breakfast Zumbathon 21.10.12

Donation by on 23/11/12

£145.00

+ £36.25 Gift Aid

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TheStarIsYou is giving 50p from the sale of each of its personalised children's gifts to help DEBRA the butterfly reach her target

Donation by TheStarIsYou Limited on 13/11/12

£2.50

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Donation by Anonymous on 05/11/12

£10.00

+ £2.50 Gift Aid

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Love the new challenge!!! You ROCK!!! Lots of love Martin @TeamB_O_B

Donation by Martin Hookway on 04/11/12

£3.00

+ £0.75 Gift Aid

Donation by Paul McKee on 21/10/12

£10.00

+ £2.50 Gift Aid

Donation summary

  • * Online donations£331.50
  • Offline donations£0.00
  • Text donations£25.00
  • Total raised£356.50
  • Gift Aid£79.00

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