The UK’s first “no frills” charity has launched with the aim of improving the lives of children with tumours. Children With Tumours is raising funds to provide respite to children and their carers affected by the condition Neurofibromatosis and contribute towards vital research.
Neurofibromatosis, which has two main types – NF1 and NF2, affects the skin and nervous system including the brain. Soft, non-cancerous tumours develop on the skin and along the nerve tissue throughout the body. A tell-tale sign of the condition is often the presence of cafe-au-lait spots on the body.
More than 25,000 people in the UK are affected by NF and every day a baby is born with the condition. NF is more prevalent than Duchenne muscular dystrophy, cystic fibrosis and Huntington’s Disease combined, but as yet there is no cure.
The Children With Tumours charity has been set up by Chris de Winter, who was previously one of the principal driving forces behind the successful Genesis Breast Cancer Prevention Appeal, and her brother Kevin Powell, an accountant with extensive experience working with charities and within the financial services sector.
Professor Gareth Evans, a consultant in medical genetics at St Mary’s Hospital and Christie Hospital in Manchester, has agreed to be the Chair of the new charity.
The trustees believe CWT is the first virtual charity in the UK. There is no office to fund and instead the charity will function entirely through its website – www.childrenwithtumours.org
In addition to raising funds to pay for children and their carers to attend respite camps and to carry out research into NF, the organisation intends to create an online community giving people in the UK and abroad the chance to share experiences and fundraising ideas.
CWT has also won the support of Kirsty Ashton, one of the UK’s highest profile NF sufferers who recently received an MBE for raising almost £100,000 for charity.
Chris de Winter said: “We have assembled a team of successful people with international experience to guide this unique charity. Our concept is to provide a simple, no frills approach to develop awareness of NF and help children be children in spite of their condition.”
Kevin Powell said: “Building confidence and giving hope are our two key statements in making a difference to the lives of children with tumours. We aim to build confidence through social networking in the UK and overseas and giving hope to our children and families by funding the science that will make a difference to the lives of those affected.”
In addition to its work around NF1 and NF2, the charity will also raise awareness of Schwannomatosis, a rare form of Neurofibromatosis.
Anyone wanting to find out more about Children With Tumours should visit the website – www.childrenwithtumours.org
UK’s first virtual charity launches to support children with tumours
