Sue Farrington Smith who lost her niece, Alison Phelan, to a brain tumour in 2001, just before her eighth birthday, is being awarded an MBE in the New Year’s Honours for services to brain tumour research and awareness-raising.
Shocked to discover the lack of awareness and chronic under-funding of research into brain tumours, Sue, 59, co-founded the charity Ali’s Dream with her sister, Julie Phelan and others of Ali’s family and friends to raise funds for childhood brain tumour research.
As a trustee of Ali’s Dream and having campaigned to raise awareness and funds since 2001, Sue led the coming together of multiple brain tumour charities and with the support of her local MP John Bercow, established the All Party Parliamentary Group on brain tumours in July 2005.
In April 2009 Ali’s Dream and other founding brain tumour charities launched Brain Tumour Research. This pioneering national charity has rapidly matured into a multi-million-pound organisation under Sue’s leadership with the establishment of four Research Centres of Excellence, across the country.
“I cried when I heard the news. It is such a great honour,” Sue said.
“It made me realise the enormity of what has been achieved in the last 15 years. 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 losing 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.
“Today, the charity Brain Tumour Research supports the UK’s largest collaboration of laboratory-based brain tumour scientists, working across a network of four Research Centres of Excellence. 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 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.”
Sue added: “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 and I know that together with our supporters we will find a cure.”
Brain Tumour Research is campaigning to see the national spend on brain tumour research increased to £30 million - £35 million a year, in line with breast and leukaemia, in order to advance treatments and ultimately find a cure.
To donate visit www.justgiving.com/braintr