Unlocking the answers to Rasmussen’s encephalitis
Children with RE suffer frequent seizures, weakness or paralysis on one side of the body, and gradual neurological decline, such as losing the ability to walk or talk.
Currently, we don’t know what causes RE, and because there are no early warning signs or reliable tests, it’s difficult to diagnose. Sadly, by the time most children are diagnosed, they have suffered irreversible brain damage. There is also no cure.
All the doctors can do is manage symptoms and prevent the disease from spreading, through major brain surgery to disconnect the affected half of the brain from the other. But this surgery comes with serious risks, such as permanent vision or speech loss.
Earlier diagnosis and alternative treatment options are desperately needed. That's why, with your support, we can fund Dr Eva Ioannidou and her team at UCL Great Ormond Street Institute of Child Health, who are aiming to not only deepen our understanding of RE, but also pave the way for less invasive treatments.
More than anything, I hope this work will offer children a chance at a different trajectory – one that doesn’t end in life-altering surgery.
Dr Ioanidou and her team will use cutting-edge technologies to search for molecular clues — such as gene changes in brain tissue or the presence of specific immune cell proteins — that could act as early indicators of the disease.
By identifying early biomarkers, they hope to enable earlier diagnosis, so treatment can begin sooner – potentially halting disease progression and avoiding children needing drastic surgery.
In rare disease research, every step forward is hard-won. Progress depends not only on scientific drive, but on support and belief. Action’s funding, made possible thanks to supporters like you, is a powerful vote of confidence in a field that’s often overlooked.
A gift today could unlock the answers to this rare disease
Dr Eva Ioannidou’s research into Rasmussen’s encephalitis is jointly funded by Action Medical Research and the British Paediatric Neurology Association (BPNA). If donations from this appeal exceed the total needed to fund this work, any additional funds will be used to support other urgently needed research for children.