A two-day health conference to raise awareness about Huntington’s Disease will be held in the Isle of Man on Thursday 22nd and Friday 23rd September, 2022.

Manx Lottery Trust is backing the event, which will be aimed at families and professionals, with a grant for £8,236.

Huntington's Disease is a rare, inherited disease that causes the degeneration of nerve cells in the brain. There is no cure for Huntington’s, which gets gradually worse over time and is usually fatal after a period of up to 20 years.

Karen O’Reilly, Treasurer of the Island branch of the Huntington’s Disease Association (HDA), said: ‘The Isle of Man falls under the Merseyside catchment for HDA (UK) advisory services, meaning that Isle of Man resident patients do not have direct access to essential and regular home visits from specialist advisors. Therefore, it is imperative that our local health and support services are aware and understand the complex needs of Huntington’s Disease patients and their families.

‘Historically, many patients have been failed by a lack of understanding, knowledge, and misdiagnosis, as Huntington’s is often misdiagnosed with Parkinson’s and Motor Neurone Disease.’

Karen explained: ‘There are two main goals that we want to achieve with the conference. First, to provide support and care for local families living with Huntington’s Disease. The second, is to provide a platform for specialist speakers to share their understanding, experience, and findings of Huntington’s. This will ensure that our local health and support services gain the knowledge and skills to deliver a better quality of care.’

Day one of the conference, which will be held at the Sefton Hotel, will focus on families, and include one-to-one sessions with a UK specialist. There will also be displays by local organisations providing advice and details of what resources are available, such as advocates, dieticians, and Hospice.

Day two will focus on education and awareness, aimed specifically at local professional services such as GPs, hospital, mental health services, home care services, respite care agencies, nursing homes and other services.

Sarah Kelly, Manx Lottery Trust Chairman, said: ‘From speaking with the HDA, it is clear there is a lack of awareness of what Huntington’s Disease is and what is needed to support Isle of Man patients and their families. This two-day conference will address this issue, providing essential information and support to local families and carers.’

To reserve free tickets visit www.hdaiom.com

For information about Manx Lottery Trust and the community funding support available, visit www.mlt.org.im

Huntingtons Disease Association Committee