Staff and students at Cardiff University mark Huntington’s Disease (HD) Awareness Week (15-21 May 2017) by pulling together to stress the importance of research.
Feature interviews on the BRAIN Unit and NMHRI websites throughout the week will include the latest HD news and research, blogs, upcoming awareness events, video testimonies with patients, and articles by key researchers in the field.
A hereditary disorder, Huntington’s disease is a little known neurodegenerative condition caused by a single faulty gene that attacks the brain’s central nervous system, with damage impacting a person’s ability to speak, walk, and feel.
According to Huntington’s Disease Association, a national charity that supports people affected by HD, around 28,480 people live with a high genetic risk of inheriting Huntington’s disease in England and Wales.
A child whose parent has HD has a 50% chance of inheriting the gene that causes this currently incurable disorder. It doesn’t skip a generation, and a child who tests HD positive will at some point develop symptoms of the disease.
The University’s Brain Repair and Intracranial Neurotherapeutics (BRAIN) Unit works to develop innovative therapies for Huntington’s through collaboration with Swansea and Bangor Universities, along with colleagues in NHS Wales and industry.
Funded by Health and Care Research Wales, the BRAIN Unit has announced approval to conduct a cell transplantation procedure in HD patients using robot technology in the hope of slowing down development of symptoms.
Determined to drive forward pioneering research, the unit also runs a BRAIN Involve committee, which is a public and patient involvement group that works to inform the centre’s HD research activities. It is made up of people who are, or have been, affected by a wider range of neurological diseases including Huntington’s disease.
The committee’s primary purpose is to bring together patients, carers and academics to shape cutting-edge research into neurological and neurodegenerative diseases.
Combatting a ‘cruel disorder’
Laura Bunting, Manager of the BRAIN Unit, said: “It is essential to generate understanding about this little known yet deadly condition while stressing the vital role our research plays in searching for therapies.
“The more people who are aware of the devastating impact HD can mean for entire families, the more support there will hopefully be for driving forward new techniques and research. Only through investing in pioneering research projects can we hope to discover treatments that may slow the development of HD symptoms and help thousands of people affected by this cruel disorder.”
To find out more about BRAIN Unit’s research and Enrol project, please contact BuntingL1@cardiff.ac.uk; or follow the Huntington’s disease awareness campaign @brainunitwales using #HuntingtonsDisease.