Anthony Giles and Mark Skinner have organised a skate from London to Brighton in order to raise money for treatment for a relative who has been diagnosed with Diffuse Intrinsic Pontine Glioma (which you can read more about below), as well as for research into a condition which does not receive much in the way of funding. This is an amazing cause to which you can donate on their Gofundme page by clicking the image below. Check out their Facebook page for updates here as well…
“Eva is 5 years old and on 15th April 2016 she was diagnosed with Diffuse Intrinsic Pontine Glioma. DIPG is an inoperable brainstem tumour that sits in the pons controlling breathing, swallowing, talking, and walking. In the UK it affects 30-40 children a year, usually aged 5-9. DIPG has a 0-1% survival rate, and median survival is 9 months after diagnosis. Treatment for DIPG has not progressed in the last 50 years due to lack of research funding. Today there are a few doctors and researchers who are dedicating their careers to finding a cure.
Eva has finished a radiotherapy course and she has responded well. Further treatment options are available, however, these are limited and not all funded by the NHS. They include a mixture of early trials and treatments in UK, mainland Europe, and America. Some of which are showing positive results. There is hope for Eva, and the other children currently suffering this deadly disease.
We decided to create this page because so many people have kindly offered their help.
We have decided on the next phase of Eva’s treatment and will be taking her to IOZK clinic in Cologne Germany on 25th July for immunotherapy.
A huge thank you to everyone who has donated, and to those who have taken the time and effort to arrange fund raising events in Eva’s name. We need to keep pushing to raise awareness of DIPG in general so more funding can go into research and trials”
On behalf of our family, we thank you for your love and support.
DEAN & EMMA