Australian Huntington’s Disease Association (SA & NT) Inc.
Working towards a world without Huntington’s Disease
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“Working together towards
a world without
“To strive for the best possible quality of life for people affected by Huntington’s Disease and their families and carers though support, advocacy and education.”
Support: Provide support and information to enable people with Huntington’s Disease and their families to understand and cope with their illness and symptoms, facilitate support networks, operate social/therapeutic weekly programs for Huntington’s sufferers
Advocacy: Lobby for ongoing funding to maintain or expand the provision of services to people with Huntington’s Disease and their families & carers, fight discrimination agaisnt people “at risk”.
Education: Increase community awareness of Huntington’s Disease, provide relevant information to Huntington’s Disease sufferers and their famililies, provide training sessions for carers, health professionals and residential facilities, promote the Association through community participation.
Social & Recreation Program
Young Carers are children or teenagers who are fully or partly responsible for the care of a parent, or sibling, who has a chronic illness or disability. Most Young Carers live in sole parent homes and perform tasks including toileting and showering, changing catheters, overseeing medications, and other household tasks such as cooking and cleaning.
Being a Young Carer has many negative impacts including, restricted social lives, interrupted schooling, isolation, emotional and psychological strain and loss of childhood.
The Association Young Carers support network aims to provide these “at risk” children with a complete break from their responsibilities, and to offer some coping and networking skills, introduce them to other children in a similar situation, let them know they are not alone, forge friendships and, most importantly, have fun.
Our Young Carers group is made up of children from families affected by various disabilities (and not only Huntington’s), therefore giving them an insight into the fact that there are other children in similar situations to their own. This helps them not to focus exclusively on Huntington’s and their possible “at risk” status.
Young Carer Network activities:
- Annual Holiday/ Retreat
- Bi-Monthly outings – including:
- Indoor rock climbing
- Ten pin bowling
- Discos, Movies
- Magic Show
- Circus Quircus
- Greenhills adventure park