HOW YOUR COMMUNITY COULD HELP CURE EB
EB is a rare condition which causes extreme damage to children’s skin. One of the key symptoms is the daily appearance of blisters on the child’s body which need to be carefully popped by a parent or physician.
This routine is painful and traumatic for the 5,000 EB children in the UK.
So we are appealing to you and your community of mums, dads, friends, volunteers, or anyone you know, to POP to make the blisters stop.
#EBpop is a fund-raising game healthy children and adults can play to help raise money for vital EB research.
We are tantalisingly close to a cure for this cruel, life-limiting disorder.
Professor John McGrath, of King’s College, London, says: “Cure EB is funding innovative, exciting research aimed at correcting the genetic defects in EB. Research supported by Cure EB is accelerating progress towards better treatments for everyone with EB.”
We are very proud that 100 per cent of the money raised will go to funding research into a cure for EB.
Imagine if your group playing #EBpop made the difference between no cure and a cure.
FOUR WAYS COMMUNITIES CAN PLAY #EBpop
I’M A DAD- GET ME OUT OF HERE!
How brave are your family or friends? Could they submit to a soaking from younger members of your group? Ask them to sit or stand and see how many water balloons they can take being popped over them before yelling the famous (albeit slightly adapted) catchphrase. Charge a donation for each balloons.
Set up a stall, perhaps at a local fair or on the last day of school term, use recycled hand wash pumps to fill water balloons – a great lesson in sustainability – charge a pound or less for each balloon and let the chaos begin.
BOUNCE, BOUNCE, SPLAT
Fill large balloons with water and hold a sports day race in a local park to see how far each contestant gets before their balloon bursts and they get soaked.
SPREAD THE WORD
Add this flyer to your group’s newsletter to ask families to film themselves having their own water balloon fight, then post the film on social media to raise awareness of EB. Use the hashtag #EBpop.
Here are some examples!
Poppy is a beautiful, bright five-year-old girl who attends primary school in Surrey and loves dancing. But Poppy will never dance barefoot because even the slightest knock or rub to her skin can cause damage. Poppy has the rare condition Epidermolysis Bullosa (EB) which stops delicate and damaged skin repairing itself. Children with EB have to wear bandages on their feet, legs and arms every single day.
Poppy was born with no skin on her left leg. For the first four months of life she was so fragile she was carried on a pillow. Twice a day mum, Kate, has to pop painful blisters all over Poppy’s body. Poppy has daily pain medication. She has special shoes to cushion her feet and pureed food because the skin in her mouth and throat is too delicate for her to chew and swallow.
Her mum Kate says: <strong>“Put aside an hour to have fun and take part in #EBpop to help find a cure and show support for some of the bravest children in Britain.”