Hi All,

As in normal everyday working and day to day life, charities have been profoundly affected by the pandemic. For us we feel very fortunate that we were able to host the Sam White Legacy dinner in February 2020 without any real issues. However, since then the charity has ticked over almost lying dormant at times.

We have over this time continued to try and send families on respite breaks to Center Parcs, I can’t begin to describe the frustrations around bookings, cancellations due to lockdowns etc. We have managed to send 2 families so far to Center Parcs so a positive has come out of all this in the end. The Trustees and I agreed to look at alternatives for our families to go on respite breaks. I recently have dealt with a company which offers places to stay at Tattershall Parks, Lincolnshire. Our first family have recently experienced this weekend break and have given feedback stating “we absolutely loved it, we would recommend other families going there. We had a lovely time, and the boys enjoyed the hot tub”.

We continue to work with Clic Sargent at the Queens Medical Centre, Nottingham, who identify families for us to attend both Center Parcs and Tattershall.

Over the last 3 months the Trustees have considered 4 proposals from the University of Nottingham. These proposals align with our charity aims regarding funding of research programs. After information was passed back and forward and a couple of meetings over Zoom, the trustees agreed to provide funding for 1 of the projects.

The successful project will be headed by Dr Madhumita Dandapani, a clinical associate professor of the Children’s Brain Tumour Research Center. The project is scheduled to start in September 2021, this is planned to run for a year. In lay terms, the project sets out to identify novel therapeutic targets to reduce cancer cell growth. The team will be looking at Paediatric high-grade Gliomas. This is an aggressive brain tumour, with the standard treatment so far being surgery and then radiotherapy which on itself is gruelling. There is a poor prognosis for many young children in respect to their mid to long term survival. Diffuse Midline Gliomas (DMG) and Diffuse Intrinsic Pontine Gliomas (DIPG) are very difficult to treat. Sam had a Glioblastoma Multiforme tumour which falls into the category of a DMG. So, Sam would be very delighted that the charity will be funding this type of research that he wanted to see happen and raise money for. Sam was fully aware that the treatments he received at the time of his illness were as a direct result of those children that went before him in trials and the many hours, weeks, months, and years that went into research.

Again, in lay terms, if/when the team have established how to effectively reduce cancer cell growth, they will then look at how best to do deliver it. Current discussions support a serum that can either be administered intramuscularly or intra venously. One of the biggest challenges regarding administration of drugs to reduce cancer cell growth is getting the drug to cross the blood brain barrier. Therefore, doses of drugs (e.g. Chemotherapy) in the main must be delivered in very high doses. Due to the sometimes-profound side effects this has on the patient, now more than ever delivering treatments that do less harm and provide a better quality of life in children and young people is absolutely paramount.

The short, medium, and long term aims of this project research cannot at this stage be guaranteed, however the teams plan is to follow these steps:

  • Initial 12-month research concentrating on reducing cancer cell growth.
  • Aim to provide a first set of results after 3-6 months.
  • If/when the project provides successful results, the team will then put together an application for further funding of approximately 200k for another 2-3 years to develop treatments, routes etc.
  • If all runs accordingly could be looking at 4-5 years for a trail of a potential new treatment to take place.
  • 7-10 years, possibly of a new treatment in place for children and young people with high grade gliomas, which will provide a reduction in brain tumour growth, less harmful side effects and hopefully lead to a better quality of life and improved survival rates.

The Trustees are very proud that we are providing the funding to give this exciting project the start it needs. We, as the team, hope that their potential successes go on to provide a better future for children and young people that are diagnosed with a brain tumour.