Although a charity ourselves we support two other charities, one via physical donations such as books and bric a brac, is Age NI; the other is Funding Neuro which is helping to cure neurological disorders.
Funding Neuro (courtesy of Alec Williams and his son Bryn)
In the last few years much has happened. Bryn went on the trial in December 2013, having his first infusion in July 2014. He is not allowed to make public statements about the trial as it is believed it could influence the response to the treatment of others on the trial. However, I can tell you what I have seen. Bryn’s voice is stronger, his face is more expressive than I have seen it in years, he is more fluid in his movements. He is using his right hand more to type, write and drive. He still has the tremor and appears to be stiff. His optimism is undiminished and above all he has the most precious commodity of all, hope.
We have received news from Funding Neuro that the contributions we have made has helped restore the health of a little seven year old girl from Cumbria who had a massive brain tumour. She is making great progress, being able to walk and talk again after one treatment with Professor Gill. More treatment is to follow, but what a great start to give this little girl back some life.
When the trial began it was hoped the results of this trial would be sufficiently encouraging to allow a further, larger trial to be funded. Recently Pfizer took an interest and it is hoped the will fund the next phase, a stage 3 trial involving hundreds of patients. The prize is a severe neurological condition can be reversed rather than merely slowed down.
Funding Neuro has decided to support Prof Gill in treating children with DIPG brain tumours, a severe brain cancer where the tumour is located in the brain stem – reckoned to be the most difficult brain tumour to treat.
No child has ever survived a DIPG, indeed nothing has even been known to slow it down. Diagnosis to death is no more than 9 months.
One of the first to be treated was intubated with Prof Gill’s system and given one infusion. She showed a remarkable improvement – being able to return to school. Unfortunately this couldn’t last as a means of giving additional infusions had not been developed. She did enjoy a full year of good life before the tumour returned.
Funding Neuro financed a research position, and the researcher worked on the drug formulation which was modified to permit multiple infusions.
An Italian boy Guido was one of the first to benefit from the new regime having so far received 8 cycles. At the start of the treatment, he was wheel chair bound and could barely talk or see. Based on previous experience, he would have expected a maximum of 9 months of poor quality life. He is now a year past that point – and more to the point he is leading a normal life – talking, walking and swimming.
Very recently Prof Gill wanted to treat a 7 year old girl from Norfolk but no funds were available and there was no time to mount a fund-raising campaign.
Funding Neuro stepped in and using the money donated by East Antrim U3A, and other donors, financed the operation. It was a success. Before, the first infusion couldn’t walk or talk – she can now do both and will be having her second infusion shortly.
Funding Neuro has not lost sight of Parkinsons. For hospitals to justify the setting up of such an expensive facility it would have to have been proved that other conditions could benefit from the equipment. To this end a full trial for children with DIPG brain tumours will start shortly and an Alzheimers trial is in the planning stage. To find out more please visit this link