The founder of the Brain Tumour Research charity, set up after the death of her niece, has retired after battling her own cancer.

Sue Farrington Smith MBE created the renowned Brain Tumour Research in 2009 by merging a number of brain tumour-focused charities.

Her work was inspired by the sad death of her seven-year-old niece Alison Phelan in 2001 to a brain stem glioma tumour - prompting her to found her own brain tumour focused charity 'Ali's Dream'.

Brain Tumour Research has since grown to become one of the largest in the UK, and holds the secretariat for the powerful All-Party Parliamentary Group on Brain Tumours.

After more than 20 years of work though, Sue has announced her plans to step down following surgery for low-grade abdominal cancer last year.

Sue, who was awarded an MBE for her charity work in 2017, said: "Although I have made a good recovery, I will continue to have scans and it is in the best interest of the charity and its future growth, and for the sake of my family, that I step down.

“I have always committed 100% of my energies to the success of the charity and our vision of finding a cure for all types of brain tumours but since my phased and now full-time return to work over the last few months, I have realised I no longer have the energy to be able to fulfil this role in the way that I would like and need to.”

She also thanked the charity’s trustees, employees and supporters for their work in building Brain Tumour Research, which began around the kitchen table of Sue’s family home in Padbury, Buckinghamshire.

The charity now employs a team of 60 and has its HQ in Milton Keynes and last year saw its best financial performance raising more than £7.5 million to support its work.

The charity’s director of finance and operations, Ashley Bailey, will take over as interim chief executive until a new leader is appointed.

Wendy Fulcher, Brain Tumour Research’s chair of trustees, who lost her husband to a brain tumour, said: “Neither Sue nor I would have chosen to be part of the brain tumour community, our roles were unwelcomingly thrust upon us.

“However, in the 20 years that we have stood together fighting to improve options and outcomes for those diagnosed with a brain tumour and their families, Sue has been the staunchest of allies and the fiercest of campaigners.

“Her energy levels have been legendary and her leadership and management of the growth of Brain Tumour Research show just what passion and drive can achieve.

"I am proud of her legacy and her trailblazing work, which will be continued by the charity, but I am also proud to call her my friend and colleague. She is a one off and the epitome of a brain tumour activist.”