We attend Parliament regularly, challenging the government and larger cancer charities to invest more in brain tumour research.
One of the reasons that we are so passionate about funding brain tumour research is that Danny’s only hope of a cure from his medulloblastoma brain tumour was the Milan Protocol.
In May 2014, the Milan Protocol was suspended due to the emergence of severe neurotoxicity and the fact that very few children were surviving the treatment. Children continue to be treated with a combination of Radiotherapy and Chemotherapy, but under a different protocol.
Research is the key to finding kinder, less toxic treatments. Without research there will be no hope for a cure.
The Danny Green Fund is proud to have sponsored several days of research at the Brain Tumour Research’s Centre of Excellence at Portsmouth University for a cost of £2,470 per day. Tiles have been placed on the Wall of Hope in Danny’s memory. We have attended a laboratory tour and seen the research team in action.
In the last 2 years we have attended numerous meetings at Westminster with our Patron Rebecca Harris MP (who is also Chair of the All Party Political Group on Brain Tumours) and Brain Tumour Research to campaign for an increase in brain tumour research spending.
Most recently we attended a very successful reception at the Speakers House to launch the 'Invest in a Cure' manifesto. The Rt Hon John Bercow gave a speech followed by Sheila Hancock CBE, our Patron Rebecca Harris MP and others effected by the diagnosis of a brain tumour. The reception was also attended by Ed Balls MP, Charles Hendry MP, Sir Peter Bottomley MP, Paul Beresford MP, Mark Durkan MP, James Arbuthnot MP, to name but a few. We met a lot of people who have also been affected by a loved one being diagnosed with a brain tumour. Working together we will find a cure!
Our work will be done only when there is a dramatic increase in the research budget.
The standard for treating High Risk Medulloblastomas in the UK was known as the Milan Protocol. As a result of some very positive outcomes in a clinical trial in Milan, the Children's Cancer and Leukaemia Group (CCLG) proposed that the UK adopt this protocol of treatment in the absence of any better form of treatment.
The Milan Protocol was a sandwich treatment, which operates on the principal that chemotherapy immediately post surgery will act to reduce the size of any residual tumour, giving the subsequent radiotherapy a better chance of 'mopping up' the rest of the malignant cells. Radiotherapy, although seen as the gold standard in terms of its efficacy in treating cancer, also has devastating long term consequences for the developing child.
Radiotherapy is then followed up by further chemotherapy to consolidate the work done by the radiotherapy. This comes in one of two forms, either maintenance chemotherapy or high dose chemotherapy. The course of action is dependent on the results of an MRI scan taken prior to the start of Radiotherapy. If there is no sign of residual tumour (complete remission), then maintenance chemo is adopted, but if there is evidence of stable or progressive disease following upfront chemotherapy, then myeloablative high dose chemotherapy is adopted, followed by stem cell rescue.
© 2015 THE DANNY GREEN FUND
The Danny Green Fund is a Registered Charity - Charity Number:1150334