Most of you will know my beautiful cousin Georgie died on April 25th 2011. He is my inspiration and the reason I am so passionate about working so hard for various cancer charities. I miss him more everyday and my work allows me to feel close to him again.
Georgie suffered from Li Fraumeni Syndrome, which is a rare type of TP53 disorder. We didn't know Georgie was suffering from LFS until he was diagnosed with his third cancer, the one that killed him at just seventeen years old.
There aren't any organisations in the UK specifically devoted to TP53 disorders but our family has decided to change that by creating a trust in Georgie's memory. Georgie's parents and siblings feel more needs to be done to help people with LFS and other TP53 disorders. They would like to concentrate on the following points:
* Increase understanding of the condition among sufferers and their families
* Support individuals and families with the condition
* Increase awareness of the condition among doctors
* Increase the rate of TP53 testing
* Promote research into the condition
* Look into treatments
* Foster the feeling of community and end the isolation that currently exists amongst sufferers and their families
The trusts website has now gone live and will be providing a central forum for sufferers, their loved ones, doctors and researchers to make contact with each other.
If you suffer from LFS or any other TP53 disorder, place get in contact and see how the trust can help you, we really do want to hear from you and see how we can help.
If you don't have LFS or any other TP52 disorder but are inspired by Georgie and would like to help us then please do let me know :)
The site is www.tp53.co.uk
Thank you for supporting our family :)
xxxx
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