Twenty-five years after the loss of seven-year-old Alison Phelan to a diffuse brainstem glioma, the charity founded in her memory has surpassed a remarkable milestone: raising more than £1 million to fund research into childhood brain tumours. Ali's Dream, established by her parents Julie and Gary Phelan and her brothers, has transformed grief into a powerful legacy that continues to drive progress in understanding and treating these devastating diseases.
From Tragedy to a £1 Million Milestone
Alison, known as Ali, died on June 7, 2001, just three weeks before her eighth birthday. Her family launched the charity on what would have been her birthday, determined to spare other families the same heartbreak. Over the past quarter-century, Ali's Dream has funded 10 research projects and played a pivotal role in establishing the first Brain Tumour Research Centre of Excellence in 2010, in partnership with Brain Tumour Research and Charlie's Challenge.
Julie Phelan, Ali's mother, said: "Ali was full of love, with a big heart and a passion for dolphins. After we lost her, our family united in grief but also in determination – determined to do something so that other families would not have to go through the same heartbreak. Over the past 25 years, Ali's Dream has raised more than £1 million, funding 10 research projects into childhood brain tumours. We have always been driven by the hope of finding a cure, and today, more than ever, that hope feels within reach."
Fundraising Efforts and Community Support
The £1 million has been raised through a wide range of activities, including annual fun days at St Joseph's Primary School in Harrow, where Ali was a pupil, abseils down Northwick Park Hospital, corporate partnerships, and dedicated fundraising groups. One such group is Jack's Goal, set up in memory of 10-year-old Jack d'Lima from North Finchley, who died from an aggressive ependymoma brain tumour in 2005.
The charity's impact extends beyond fundraising. After discovering that only one per cent of national cancer research spending was allocated to brain tumours, Ali's aunt, Sue Farrington Smith, a trustee of Ali's Dream, contacted her MP, then John Bercow. This led to the formation of the All-Party Parliamentary Group on Brain Tumours, raising awareness at the highest levels of government.
Establishing Brain Tumour Research and National Impact
In April 2009, Ali's Dream helped create Brain Tumour Research, uniting 14 brain tumour charities into a single national voice. Sue Farrington Smith served as managing director and later chief executive until her retirement in 2023, receiving an MBE in the 2017 New Year Honours for her services to charity. She said: "When I received my MBE, I felt incredibly honoured, but it also made me reflect on how much has been achieved since we lost Alison, just three weeks before her eighth birthday. There are so many people who have supported us along the way. Together, we have always been focused on finding a cure for brain tumours – and now, more than ever before, we have real hope for the future."
To date, Brain Tumour Research has invested more than £37.5 million in research. Ali's Dream is currently funding a four-year postdoctoral fellowship with a £250,000 grant at the Brain Tumour Research Centre of Excellence at Queen Mary University of London.
Research Advances and Hope for the Future
Professor Silvia Marino said: "This donation from Ali's Dream is instrumental in helping us to deepen our understanding of high-grade paediatric brain tumours such as medulloblastoma, DIPG and ependymoma and move closer to developing more effective therapies, which are less toxic and create fewer side effects, for young patients."
Dan Knowles, chief executive of Brain Tumour Research, added: "Alison Phelan's legacy is truly extraordinary. From the devastating loss of a seven-year-old girl came a movement that, just eight years later, helped to establish Brain Tumour Research. We are incredibly proud of our long-standing relationship with Ali's Dream and deeply grateful for everything this remarkable Member Charity has achieved – and continues to achieve – in changing the story for children diagnosed with brain tumours and their families."
Diffuse brainstem glioma (DIPG) accounts for 10 to 20 per cent of childhood brain tumours and carries an average survival time of just eight to 12 months. Brain tumours kill more children and adults under 40 than any other cancer, underscoring the urgent need for continued research.
