Poppy Gee
Thames Paddleboard for Cure EB page
Fundraising for Cure EB
Story
Sunday 26th June 2022
Poppy Gee is a 10 year old girl that attends the local junior school in our community alongside many of our own children. Meeting Poppy was probably the first time that we had come across Epidermolysis Bullosa (EB) or Butterfly Syndrome, a rare and extremely painful genetic condition affecting the skin. If you have EB your skin is as fragile as a butterfly’s wings; it blisters or tears away at the slightest touch, leaving severe burn like wounds all over the body, eventually leading to skin cancer. Currently there is no cure.
Poppy is a truly remarkable child. She shows unbelievable strength of spirit. She is so determined, participating in all aspects of daily life at junior school. She does not let her condition stop her, she has a go and gets stuck in regardless of how difficult EB makes life for her. Despite the pain she is fun, brave and even on the toughest of days will still manage a smile!
On Sunday June 26th a group of us will be paddle boarding 10 miles along the River Thames to raise money for the charity Cure EB. Cure EB’s mission is to find a cure for EB through funding vital research. 100% of all donations goes in to funding research.
Most of us are complete novices and took up paddleboarding as a lockdown hobby so have never gone this distance before. It’s going to be a challenge but we are a determined bunch. Please donate and support if you can.
Kate Gee, Maria Steinert, Emma Makepeace, Kate Marsh and anyone else who would like to join us , will be stand up paddleboarding, 10miles along the Thames to raise money for Cure EB.
We will start at 9.30am at the Ferry Café, Nautacalia Shepperton, where our families including Poppy Gee, who has bravely battled EB for 10 years, will be cheering us off and collecting donations. We hope to engage local businesses , including those on the riverside, to support us on our journey .
We would love to invite as many local businesses as possible to sponsor us and show community support.
#10milesforCureEB
Shepperton , Sunbury, Molesey, Hampton Court, Surbiton, Kingston Upon Thames, Teddington
If you are able to support us with a collection point along our river route, please contact k.asher@hotmail.co.uk
EB is a painful skin condition that causes blisters and wounds all over the body. It is like having severe burns outside and inside that eventually lead to skin cancer. There are up to 5000 adults and children living with EB in the UK,(5000,000 worldwide) and yet few people have heard of it. Those who have realise what a devastating impact it has on sufferers and their families. It is unrelenting in its pain and unrelenting in the distress it causes. Currently there is no cure but enormous strides have led us to the brink of gene therapy treatments and cures. Clinical trials have started around the world aiming to treat EB. A very important gene corrected skin graft trial has started in Paris which is one of the projects funded by Cure EB. Our name is our mission – to cure EB.