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Carers, Family & Friends

Carers are often partners or other family members, such as parents or siblings. The care they provide can vary from simply helping someone out on a regular basis with shopping, cooking or washing to providing support 24 hours a day, seven days a week. However, many carers who provide this care and support will not view themselves as a “carer”. First and foremost they will view themselves as a partner, parent, child or sibling.

Additionally, due to the hereditary nature of HD, carers may be looking after or supporting more than one member of the family at the same time. Due to the possibility of personality and behavioural changes in the cared for person and the long duration of the illness,  caring for someone affected by this disease can be particularly challenging and demanding – physically, emotionally and financially.

This information and advice is provided on various aspects of caring for a person with HD and aims to support carers who are looking after a family member affected by the disease.

WORDS: adapted from Huntington’s WA

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Dancing at the Vatican documentary

Dancing at the Vatican is an inspirational documentary telling the story of a seemingly impossible journey made by families bound by the same devastating, genetically inherited disease, Huntington's. The film captures this pivotal moment of hope for Huntington's Disease families in a film that will lift spirits after the ravages of 2020; showing that if enough people who refuse to give in, come together, anything is possible.

Huntington Study Group education

HSG and its members offer free educational opportunities to providers so they can offer quality care to their patients and families impacted by HD.

Clinical trials: your questions answered

This leaflet has been produced by Roche, in consultation with Huntington’s disease organisations, to provide basic information on clinical trials of medicines.

HD News Spring 2020

Read our HD News Spring 2020 edition.

National Carers Week 2020

Replay the free online webinars and self-care and wellbeing workshops for carers conducted during Carers Week 2020.

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.

Featured Support Groups and Services

Huntington’s NDIS Support Coordination

We understand the progressive neurodegenerative nature of Huntington’s disease and the effects it can have on a person’s day-to-day life and the impacts it has on their carers. The support coordinators will work with you at your pace to remove some of your daily stress by coordinating your supports. We are here to empower you to live a quality life with dignity and autonomy. We know that people who are experiencing symptoms of Huntington’s can lose capacity to direct their own life.

Huntington Disease Service – Westmead Hospital University Clinic

GP/Specialist referral required for this service. This service provides regular Medical review by Huntington disease specialist Neurologists for anyone with Huntington disease, at all stages of the disease. It is also available for those at risk of inheriting Huntington’s disease or undergoing testing for Huntington disease. The Social Workers provide support and advice for social ... Read more

Music and Social club

Unfortunately this program has been cancelled due to the COVID-19 pandemic. We will revisit the program when over 60% of the NSW/ACT population are vaccinated against COVID-19. Click here to find out more about this program.

‘My Voice’ Art club

The philosophy of this art program is phenomenological in nature; promoting the development of self-awareness. The art experience allows a creative response which is unique to the person participating. This art club is for those in the earlier stages and independent with all activities of daily living.

Central Coast Carer Support Group

Calendar of events
This is a self-managed group for carers of a person living with HD in the Central Coast area.
This group meets monthly.
Meetings have been posted due to the COVID pandemic.
Come back regularly to check for updates.