Our supported charity

We have decided to raise money for a charity as an ongoing project throughout the year. The charity we have chosen is DebRA which helps children with the very painful skin condition, Epidermolysis Bullosa, that causes blisters all over their body. They are known as The Butterfly Children.
Epidermolysis Bullosa (EB) is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub (from clothes and bedding for example) 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.
Visit http://debra.org.uk/ for more information.

Grateful thanks to The Ecology Building Society in Silsden for their generous donation of £100. (Not Keighley as I told you). And to Malcolm, Jessie's pen friend from "down south", who also very kindly contributed £100 when told of our efforts. Also to Caroline from Chrysalis Beauty Salon in Keighley who offered a £25 voucher to be raffled to help us. The raffle for that raised £88.

Many many thanks to all who donated prizes and attended our Special Butterfly Social. We had a fun afternoon with lots of dancing and smiles all round. The amount raised on the day was a fantastic £459.26. Well done to everyone.

We started the appeal in May with hopes of raising £1,000 by Christmas. That has been blown out of the water already so now the sky is the limit. Let's see how much we can collect.
Any fund raising ideas are eagerly awaited.
Thanks again to everyone
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THE BUTTERFLY CHILDREN
Thank you for helping to raise money for “DebRA”, the charity that helps children born with the very painful condition Epidermolysis Bullosa ( E B )
  • We intend to raise as much money as possible throughout the year to help with research and treatment.
  • We're opening a dedicated bank account to save the money and would love to raise £1,000 by Christmas.
  • We'll keep records of all money raised and you're welcome to look at these whenever you like.

Please do what you can in any or all of the following ways:
(where ALL THE MONEY will go to DebRA.)
Buy one or more butterfly badges at £1.00 each.
Bring and buy items at classes. Please put a price on items and take them home again if no one buys them. You can bring them again the following week.
Collect your loose change and put it in the tin.
Donate any amount you can afford.
Donate raffle prizes at social nights and buy raffle tickets to win them back again!
Take part in occasional competitions that we organise.
Attend and advertise a special social that we hope to arrange later in the year. Open to everyone.

Held Sunday, 19th July 2009
- we raised £459.26!
If you can think of any other money raising ideas please let us know.
Contact us here
Q: What is Epidermolysis Bullosa (EB)?
A: EB is the name of a group of genetic disorders causing blistering and shearing of the skin from even the gentlest friction, often from simple day to day activities.

Q: What does the name mean?
A: The skin is made up of a number of different layers. The outer is called the epidermis; the inner layers are the dermis. 'Bullosa' is simply the name for a blister and 'lysis' means breakdown. Here Epidermolysis Bullosa means the breakdown and blistering of the outer skin.

Q: What causes the condition?
A: All forms of EB are genetic in origin and the genes responsible for the three key forms and some 20 subsets have been identified. The condition is inherited, it cannot be caught.

Q: What are the symptoms of EB?
A: EB can be grouped into three main types; EB Simplex, Dystrophic EB (dominant or recessive form) and Junctional EB (lethal and non-lethal). The symptoms in all these forms are blistering of the skin which may be, dependant upon type, restricted to specific areas of the body such as hands and feet. In the milder forms of EB the blisters heal without leaving permanent damage to the skin, in other forms scarring occurs that can lead to permanent disfigurement and disability. Some forms of Junctional EB are life threatening in infancy.

Q: Does EB only affect the skin?
A: No. Although the effects of EB on the skin are the most visible symptoms, other parts of the body can be affected, for instance in RDEB the internal mucous body linings (inside of mouth, throat, eyes and anus) may blister causing discomfort and difficulty in swallowing and eating.

Q: Is EB infectious or contagious?
A: No, you cannot 'catch' EB from a person with the condition and there are no risks from normal activities such as swimming or bodily contact.

Q: How common is EB?
A: One in 227 of us has a defective gene that causes EB. One in 17,000 live births will be an infant with a form of EB with the condition affecting both sexes and all racial groups worldwide. There are around 5,000 people in the UK living with EB.

Q: Is EB hereditary?
A:Yes, genetic conditions such as EB are passed on from parents to children and this can occur in a number of ways, for instance, just one parent may pass on a defective copy of the gene or, in some cases, both parents. As we all have two copies of each gene with each parent passing one copy each to the new child there are instances where the condition is not passed on.

Q: Can people at risk be tested for EB?
A: Yes. It is possible for those known to be at risk to receive pre-natal diagnostic testing at 8-10 weeks to ascertain if EB has been passed on.