Donation. The giving spirit of the community will provide comfort and safety to Emmerton Park residents living with Huntington’s disease.
More than $20,000 in donations from the Montagu Campers, Treasure Chest and Huntington’s Disease Association of Tasmania allowed for the purchase of a purpose built bed and chair for the local aged care home.
Huntington’s disease is a genetic degenerative disorder affecting the neurological functions.
It is categorised by involuntary, abrupt and unpredictable movements known as chorea.
President of the state association Pam Cummings says Tasmania has the highest concentration of those living with the disease in Australia, due to the state’s isolation.
The state is second in the world, behind the South American country of Venezuela.
“It’s known as the worst disease of mankind,” she says.
“It’s a hideous disease which affects the cognitive, emotional and physical self.”
Symptoms and diagnosis generally occur between 30 and 50 years of age however there have been cases of juvenile or late onset. Progression and severity differs for the individual and there is currently no known cure.
“It’s quite insidious,” Pam says. “Family will begin to notice a change in personality, clumsiness, a change in walking patterns . . .”
The donation of a soft padded bed and chair to Emmerton Park will protect sufferers who are prone to injury.
Manufacturer Novacorr Healthcare invested more than six years of research and design in the purpose built, remote controlled bed and chair.
“There is some hope,” Pam says. “There is lots of research going on all over the world and scientists have now isolated the gene . . . we always have hope.”
Emmerton Park chief executive officer Ian Adams said staff and residents were overwhelmed by the support of more than $20,000 and the prompt arrival of the equipment from Queensland, three weeks after the initial conversation.
“What I think is really great is the community support to get behind a worthwhile project without hesitation.”