Wednesday, 14 December 2011
The George Pantziarka TP53 Trust
Li Fraumeni Syndrome (LFS) is one of the most serious forms of inherited TP53 disorder. My son, George, had LFS, which we assume he inherited from his mother, who died of ovarian cancer at the age of 29, when George was just over a year old. As I have written before, we did not know that George had LFS until after he was diagnosed with his third cancer - the osteosarcoma which ultimately killed him.
While LFS and other congenital TP53 disorders are rare, the fact remains that there is little awareness of the issue, both amongst the general population and also amongst the medical profession. There are no support groups, no charities, no central information resources and currently no central registry of sufferers. For those families with LFS or other TP53 disorders, it can be a lonely and frightening existence, with children and adults alike succumbing to one or more cancers.
Having discussed the issue with a number of doctors and researchers, we have decided to create the George Pantziarka TP53 Trust, in George's memory. The aim is to provide support to families and individuals, to provide information to all, and to help foster understanding and research into the condition.
As a first step we will be launching a web-site and forum in the new year. The plan is to use the site to bring together all those affected or interested in the condition. Further down the line we hope to register the Trust as a charity so that we can expand the range of activities that we can undertake.
For now, any offers of support would be greatly appreciated.