26 Umbrella Groups attended the Umbrella Group Information Day at University College London on Friday 19th September 2008.
Paul Carbury, Chief Executive of Samantha Dickson Brain Tumour Trust, welcomed everyone and thanked them for coming. He introduced Neil and Angela Dickson, founding Trustees, and Angela gave a brief history of Sam's story. She went on to explain the reason for setting up the charity, the success of the research and patient support programme, and her conversation with Katie Sheen which led to the first Umbrella Group, the SDBTT Astro Fund. There are now 52 Umbrella Groups, all with their own bank accounts, working hard at raising the profile of brain cancer and funds for research or patient support.
Neil followed with a detailed account of the research programme. Due to the first-class peer review process of all grant applications, many sponsored projects have made significant progress. He outlined five projects which have made a breakthrough in the last few months, and how we are making a significant impact on research. The UK is now internationally recognised as being second to America in paediatric research. At an International Conference in Chicago, 14 of the charity's projects were chosen for presentation.
Paddy Hughes gave an emotional talk about his own experience at having lost his beloved grandchild, Alfie, and why he set up the umbrella group and hints on fund-raising for the SDBTT Alfie Morland Fund. Gary Clark also talked about his much loved son Kieron, and why he became one of the early founders of the Umbrella Groups and how he has become successful at fund-raising. His support for research into Medulloblastoma is now beginning to reap rewards, and more details will shortly be announced on our Research pages.
Paul Carbury, Chief Executive of Samantha Dickson Brain Tumour Trust, gave an overview of the Business Plan for the future of the charity.
After lunch, Angela presented each Umbrella Group with an engraved paperweight in gratitude of their fund-raising achievements.
Roz Osborne, Head of Patient Support, outlined her plans for the future development of patient support, with the help of Heather Waterton (now based in Southampton), Sylvia Woods (York); and Katie Sheen (Cheshire). Umbrella Groups were encouraged to pass patient enquiries to Roz, so that she could identify their individual needs and pass the enquiry on to one of the Patient Support Managers.
Paul Carbury then introduced Professor Brandner and Professor Hochhauser, who both gave very interesting talks on research:
Professor Sebastian Brandner, Chair of Neuropathology, Institute of Neurology, London, talked about his exciting new testing to improve diagnosis for patients.
Professor Daniel Hochhauser, Consultant Medical Oncologist at UCL, London, gave an overview of drug development reasearch in the UK.
The floor was then open for questions and general discussion before everyone was invited to a reception at the new Samantha Dickson Brain Cancer Unit at UCL, Huntley Street, London.
The day was a huge success, and all participants left "buzzing with ideas!"