Neurological conditions /

Huntington’s disease

Huntington's disease is an inherited brain condition that damages nerve cells in the brain. It is progressive and gradually reduces a person's ability to walk, talk, think and communicate. There is no cure for Huntington's and its progress cannot be reversed or slowed down.

Who is affected? 

There are around 7,000 people living with Huntington’s in the UK.

The disease is caused by a faulty gene on chromosome 4 - the huntingtin gene (HTT) - which is passed down through families. If someone has a parent with the faulty HTT gene, they have a 50/50 chance of inheriting the gene. Everyone with the gene will develop the disease.

Huntington's affects both men and women. Symptoms usually develop when people are between 30 and 50 years old and progress relentlessly over the next 10 to 20 years. Rarely, symptoms develop at a younger age,including in childhood. 

How we help

Most recently, we have helped fund research at Cardiff University, led by Professor Lesley Jones and Dr Thomas Massey. This research has looked for changes in other genes in people with Huntington's, specifically changes that influence the age at which Huntington's develops. The team has found two major new types of genetic variation that show a large influence on age of onset. Their data is a starting point for new experiments to explore the mechanisms by which this genetic variation affects age of onset, and to inform the development of specific therapies. 

This research was funded by money raised by Jack May and family. At the age of 18, Jack found out that he has the Huntington's gene. He ran the 2017 London Marathon to raise money for research. Read Jack's story.

Previously funded research includes our funding of PhD student Helen Crawford, at UCL Institute of Neurology. Helen used imaging techniques to examine the structure and state of the brains of Huntington's patients (including 'pre-manifest' patients, who had not yet developed symptoms), compared to healthy controls. Her work has improved understanding of the changes that take place during the early stages of Huntington's, and gives a greater insight to ways to manage and treat the disease.