Huntington’s Disease Network going from strength to strength

A network set up to drive forward community support, interventions and engagement for those living with Huntington’s disease is celebrating its one-year anniversary in April. 

The Leicester Huntington’s Disease Network (LHDN) was set up and launched by the University of Leicester in collaboration with Leicestershire Partnership NHS Trust last year.

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, behaviour and personality. People and families struggle to cope with the difficulties associated with the condition.

Lecturer and practising clinical psychologist Dr Sarah Gunn and neurogenetics Professor Flaviano Giorgini from the University are co-leading the network, alongside senior staff from Leicestershire Huntington’s Disease NHS services (Dr Reza Kiani, Consultant Psychiatrist, and Dr Maria Dale, Clinical Psychologist).

Dr Gunn has been working with people affected by Huntington’s disease for 13 years, helping to understand the psychological difficulties experienced by individuals alongside their family members. She has developed a number of therapeutic programmes for people affected by Huntington’s disease, and delivers them with the Huntington’s Disease Association (HDA). These programmes are showing positive outcomes, providing hope that psychological wellbeing can be effectively improved among those affected by Huntington’s disease.

She said: “We have seen great growth in the Network over the first year, with people coming from surrounding counties to attend. We ran out of space at our last event in November, and will need to plan bigger for our future meetings so everyone can come. We have lots of people attending from HD families – who are the heart of our community and the reason we set up the Network – plus clinicians and researchers.

“Over the last year, we have been so grateful for support from high-profile speakers from the Huntington’s Disease Association, the European HD Network (EHDN), and of course our amazing experts who have bravely taken the stage to talk about their experiences of HD. 

“We have begun to broaden what we offer, including providing information about clinical services, research trial updates, and an HD support group session for people from HD families which was really well-received. In the next year of LHDN, we will continue to grow the ways we serve our local HD community. We’re hugely excited about the difference we can make as part of this collaboration and the benefits it could bring for this population who really need it.”

Tina Arnold, 63, from Leicester, is dealing with HD in her family and said: "I have, over many years, witnessed several family members struggle with Huntington’s, with all but my sister, who is in the latter stage, eventually succumbing to this awful disease.

“The events I’ve attended with the Network have allowed me to share my personal stories with others who too have been affected in various ways themselves.

“I didn't previously have the opportunity to talk to others regarding my experiences around HD and had therefore kept my thoughts and feelings to myself, but through these events and being able to talk to others it has shown me that I'm not alone."

Speakers at LHDN events have included those with loved ones or living with the disease sharing their powerful stories. The Network has also been proud to host Professor Anne Rosser from the European Huntington’s Disease Network (EHDN) and Cardiff University, Cath Stanley, the chief executive of the HDA, Professor Jane Simpson from Lancaster University, and Professor Darren Monckton from the University of Glasgow, 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, as well as implementing and directing novel science initiatives for the network. 

“It has been a very productive first year for the network. We have been fortunate to be supported in these activities by several colleagues from around the UK, as well key local experts,” he said.

“The work to date has been very well received by the local Huntington’s community, and we plan to further expand this work based on feedback.”

To find out more about the network email sarah.gunn@leicester.ac.uk