Lily is living with BPAN - a rare and devastating neurological disease for which there is no cure.
This disease strikes young children, causing them to develop slowly and to miss key developmental milestones. It leads to seizures, muscle problems, symptoms of Parkinson’s, dementia and eventually early death.
We want to work towards a cure and have promised to fund a potentially groundbreaking research study – but we need your help.
Cerebral palsy research
Tom was just a baby when he was diagnosed with quadriplegic cerebral palsy – a severe physical disability.
Now 6, his disability has affected all aspects of his life. He uses a wheelchair and everyday activities such as eating and playing with toys are challenging. He has also developed epilepsy.
Action is dedicated to helping children like Tom, which is why we’re funding several research projects into cerebral palsy.
Fighting childhood cancers
Joey was just four years old when we was diagnosed with brain cancer. He battled a gruelling year of surgery, chemotherapy and radiotherapy.
Joey is now ten and thankfully symptom free, but we know not every story is the same as Joey's.
That's why Action is funding vital research into childhood cancers to help more children diagnosed with cancer.
Research into cystic fibrosis
Every week in the UK, around four people – many of them babies and children – are diagnosed with the cystic fibrosis. Making it the UK's commonest life-threatening inherited disease that can make it hard for children to breathe and for their bodies to digest food.
Currently there is no cure for cystic fibrosis and although there are treatments to ease symptoms these can be time-consuming and gruelling.
Action is determined to help which is why we're currently funding research projects that aim to help improve the quality of life of babies and children with cystic fibrosis.