Minister Announces Huntington’s Disease Trust

Minister Announces Huntington’s Disease Trust

Western Australia Minister for Racing and Gaming Brendon Grylls

Young People Affected By Huntington’s Get Helping Hand

Victor P Taffa

  • Gaming Community Trust to provide $283,569 to Huntington’s WA youth project
  • Project will provide positive role models and support for youth impacted by Huntington’s disease
  • New focus on young people at risk of Huntington’s in remote areas of Western Australia

Young West Australians affected by Huntington’s disease, particularly those in remote areas, will benefit from a new project funded by the State Government’s Gaming Community Trust.

Racing and Gaming Minister Brendon Grylls today announced the Trust, which derives funds from unclaimed gaming winnings in Western Australia, will provide $283,569 to Huntington’s WA for its new Early Intervention for Youth Project.

 

“The three-year project will serve as a helpful resource for parents, fund health professionals to work with families affected by Huntington’s disease and support the needs of children impacted by other neurological conditions such as multiple sclerosis and motor neurone disease.” Mr. Grylls said. 

“As a non-profit organisation seeking funding for a disease that affects a small proportion of the general population, Huntington’s WA have limited funding options.  However, the effect of the disease on family members is profound, particularly for young people, due to the complexity of the factors associated with the disease.”

“This grant money will help reduce the sense of isolation young people experience by connecting them with others in the Huntington’s community, while providing positive role models and support.”

Huntington’s disease is a fatal, inherited disorder that leads to uncontrolled movement, loss of motor functions and personality changes. There is no cure and no proven therapy for altering the disease’s progression which leads to incapacitation and eventually death.

Mr. Grylls said the Early Intervention for Youth Project would have a specific focus on providing education and support to young people impacted by Huntington’s disease in remote areas.

“Sufferers of rare diseases are often most disadvantaged when they live outside the metropolitan area.” Mr. Grylls said.

“I am pleased that regional West Australians who are affected by Huntington’s disease will stand to benefit from extra resources funded by this new project.”

Fact File

  • Gaming Community Trust was established in 2002 to provide advice and make recommendations to the Minister for Racing and Gaming on the distribution of funds and grants for the general benefit of the community
  • Huntington’s disease affects both males and females, occurring at a rate of about 7-10 per 100,000 in most Western countries