Growing up in a family affected by Huntington’s disease (HD) is extremely challenging and difficult. We are establishing a Youth Program which will support young people in NSW who face unique challenges because of HD. HD is like having Parkinson’s, MND and Alzheimer’s all at the same time. It is a genetic, neurological disorder characterised by involuntary movements, personality and behavioural changes, speech and swallowing difficulties. Age of onset is usually between 35 and 45 years and it affects both males and females. There is no proven treatment or cure. Each child of an affected parent has a 50% chance of inheriting HD. There are currently no specific support services in NSW for young at risk people. They experience many challenges: the fear and stigma of inheriting HD, the stress of having a seriously ill parent, financial hardship, the responsibility of caring for an affected parent. The Youth Program will prepare these young people for their future lives.

Holly’s Huntington’s Story