We are currently supporting over £5 million worth of research at research hubs across the UK.
An overview of our projects includes:
- Researching new and kinder treatments for children with rare and complex conditions like incurable brain tumours and inflammatory bowel diseases.
- We’re researching specific conditions such as epilepsy, spina bifida, Crohn’s disease, Down’s syndrome and cerebral palsy.
- We fund a lot of research into rare conditions that are particularly devastating, such as Krabbe disease that can cause seizures, and sight and hearing loss. Sadly, there’s currently no cure for Krabbe disease.
- In 2019, as part of our annual joint national funding call in partnership with GOSH Charity, we funded 12 new research projects — a total of £2.1 million worth of research into childhood conditions. We don’t receive any government funding so are completely dependent on the kind donations and fundraising efforts of our generous supporters.
Three of our current research projects
Professor Dimitri Kullman, UCL Institute of Neurology: Pioneering gene therapy for difficult-to-treat epilepsy. Developing a new technique to correct the genetic mistake responsible for focal cortical dysplasia (FCD), the most common cause of drug-resistant epilepsy in children. The treatment aims to stop a child’s seizures, which in many cases cannot currently be helped by drugs or surgery.
Dr Susan Campbell, Sheffield Hallam University:
Finding better way to diagnose and treat Vanishing White Matter Disease - a devastating brain condition for which there is currently no cure. Investigating whether a recently discovered molecule could pave the way to faster, less invasive diagnosis and treatments for a rare and devastating brain condition where nerve fibres are damaged and depleted.
Dr Matthias Zibauer, University of Cambridge:
Studying single cells and growing 'mini-guts' to help understand inflammatory bowel diseases like ulcerative colitis and Crohn's disease. Aiming to better understand the causes of inflammatory bowel diseases, to find better ways to treat them sparing thousands of children a life-time of symptoms.