Sharon & Gary / Reglaze fully support the Debra charity and have so far raised just under £10,000 with the help from our customers, colleagues, friends & family. This charity does not receive any government funding. Some of our lovely friends Peter & Dawn’s son Lucas was born with EB.
Many of us would probably sit and moan about the pain – NOT Lucas he takes it all in his stride – One of the bravest little men we have met .
Please take time below to read about the DEBRA Charity and the next time you decide to do a sponsored bike ride , swim , walk please raise your funds for this very worthy cause.
What is EB?
Epidermolysis Bullosa (EB) is a group of genetic disorders that result in fragility of the skin and, in some cases, other internal membranes and organs. Blisters, open wounds and sores form as a result of the slightest touch, rub or trauma.
Certain types of EB can be fatal in infancy and others are severely life-limiting. We estimate that there more than 5,000 people with EB in the UK, and 500,000 worldwide.
EB may be inherited in either a dominant (usually one parent carries the gene for EB and is affected by the condition themselves) or a recessive form (where both parents carry the gene but are usually unaffected, so the birth of an affected child is totally unexpected).
EB can also arise through a new spontaneous mutation whereby neither parent carries EB yet the gene mutates spontaneously in either the sperm or the egg before conception.
In dominant EB, there is a 50% chance of passing the disorder to children: in recessive EB the chance is 25%.
Rarely, a severe form of EB can be “acquired” as the result of autoimmune disease, whereby the body develops antibodies to its own tissue proteins.
EB can be divided into 4 main types: Simplex, Dystrophic, Junctional and the recently classified Kindler Syndrome.
There is currently no known cure for EB.
A letter from DEBRA…
Dear Mr & Mrs Blackmore
May I just put on record the Charities thanks for all the support you have shown over the last few years for a Charity like DEBRA who totally relies on voluntary donations such as yours it means a great deal to families living with EB. The recent charity ball that you held at the Midland Hotel was really a credit to you both & everyone had a great time.
Over the last few year’s you have managed to raise just short of £10,000 for DEBRA , this has enabled the Charity to fund vital research into finding lasting effective treatments for children and adults living with EB. I know only too well why you are both so committed to DEBRA due to your friendship with a local family that DEBRA supports in many ways.
Once again, many thanks to you both, for all your lovely support. I hope to see you both at the DEBRA Ball in Manchester in October.
Regional fundraising Manager