New network launched to advance research into Huntington’s disease

A new network has been launched by the University of Leicester to drive forward research, interventions and engagement for those living with Huntington’s disease. 

Huntington's disease is a life-limiting inherited condition that damages nerve cells in the brain causing them to stop working properly. This leads to loss of movement and cognition over many years, as well as changes in emotions and personality.

Now it’s hoped the Leicestershire Huntington’s Disease Network (LHDN), which was officially launched on Saturday (20 April) at a special event at Attenborough Arts Centre, will help drive forward innovation and research taking place as part of a collaboration between patients, charity partners, NHS services as well as University leads.

Lecturer and practising clinical psychologist Dr Sarah Gunn and neurogenetics Professor Flaviano Giorgini from the University are running the network alongside senior staff from Leicestershire Huntington’s Disease NHS services.

Dr Gunn has been working with Huntington’s disease patients for over 10 years, helping to understand the psychological difficulties experienced by individuals alongside their family members. She has developed a number of therapeutic programmes for patients and delivers them through the Huntington’s Disease Association (HDA).

She said: “We believe this is the first network of its kind in the East Midlands to bring together people and families affected by Huntington’s disease, healthcare staff, and researchers. We’re hugely excited about the difference we could make as part of this collaboration and the benefits it could bring to patient care.

“One of the worst elements of living with Huntington’s is the feeling of isolation and hopelessness, whether as a person carrying the gene or as a family member. We aim to provide hope and solidarity. This network shows how passionate we are about improving the lives of people affected. 

“The launch itself was an incredibly positive and inspiring event, which gave us an opportunity to gather thoughts and ideas for future research from people affected by Huntington’s so that we can try and build a brighter future for this severely under-served population.”

As well as learning about current research taking place at the University, those attending the launch heard from Professor Anne Rosser from the European Huntington’s Disease Network (EHDN) and Cath Stanley, chief executive of the HDA, alongside healthcare staff affiliated to clinical and genetic services.

Professor Giorgini has been researching Huntington's since 2003, using model organisms to study the pathogenic mechanisms underlying the disease with the hope of identifying potential therapeutic targets. He is also Science Director of the EHDN, where he helps coordinate research grants and the science strategy.

He said: “This new network will be critical in bringing together Huntington’s disease stakeholders, which we hope will lead to expansion of research and improvements in the quality of lives of affected individuals and their families.”