Our Chief Executive Sue Farrington Smith awarded MBE in New Year’s Honours
“I cried when I heard the news. It is such a great honour. It made me realise the enormity of what has been achieved in the last 15 years, since we lost my sister’s little girl, Alison Phelan, three weeks before her eighth birthday.
Like so many others in the brain tumour community, my passion for this cause is driven by loss. Not a day goes by when I don’t think about Ali. Seeing the devastation of Ali’s parents, Julie and Gary because they couldn’t save their little girl drove me to try to make a difference. I was so proud and humbled by Julie and Gary that they wanted to start the charity, Ali’s Dream, to raise money for research into childhood brain tumours, so soon after we lost her.
There are no words to describe how the loss of a child shatters a family. I still feel the pain of losing her and witnessing the continuing pain of my sister and her family makes me feel so helpless, despite every achievement and milestone we reach as a charity.
I still remember our complete shock and disbelief when we discovered that brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research was being allocated to this devastating disease. We found this unacceptable.
As a trustee of Ali’s Dream, I led the coming together of multiple brain tumour charities and we set about campaigning to raise awareness and funds. With the support of my local MP John Bercow, now Speaker of the House of Commons, we established the All Party Parliamentary Group on brain tumours in July 2005.
With a background in the corporate world, I pledged the rest of my life’s work to finding a cure. In April 2009, Ali’s Dream and other founding brain tumour charities joined forces to launch Brain Tumour Research, dedicated to finding a cure for brain tumours. Alongside Professor Geoff Pilkington at the University of Portsmouth, we created a vision of how brain tumour research could be transformed in the UK, with Research Centres of Excellence driving progress.
Brain Tumour Research now supports the UK’s largest collaboration of laboratory-based brain tumour scientists, working across a network of four Research Centres of Excellence. Our unique approach is designed to fund long-term, sustainable research, building the ‘critical mass’ of expertise needed to find a cure.
Our campaigning at Westminster has driven the formation of a Government Task and Finish Working Group, raising awareness at the highest levels.
Every day I hear stories of families who have been devastated by brain tumours. I can often be found, well into the small hours of the morning, personally signing thank you letters to supporters or listening to people pouring out their hearts on the phone.
I feel blessed that so many patients, families and supporters choose to fundraise and campaign alongside us. They keep me motivated and we couldn’t have achieved what we have without them.
There are so many people who have been with me and Ali’s family and friends on this journey, including my hugely supportive husband and children. I am particularly humbled by the bravery and dedication of Wendy Fulcher, Sandy Saunders and Nigel Boutwood, trustees of Brain Tumour Research. It was our shared vision from the start. We have always been so completely focused on finding a cure for brain tumours and now, more than ever before, we have such hope for the future. I know that together with our supporters we will find a cure.”
As 2016 draws to a close, we wish you all health and happiness for the New Year and look forward to the progress we will make together in 2017.
Sue and the Brain Tumour Research Team x