Families impacted by Huntington’s disease will walk together in Launceston today to raise awareness of the inherited condition, which organisers say affects Tasmanians at one of the world’s highest rates.
Walk 4 Hope Launceston runs from 10:30am to 12:30pm at Riverbend Park in Invermay.
The community walk will be followed by a barbecue and family activities.
Huntington’s Australia, which hosts the annual event, said Tasmania had the second-highest rate of the disease per capita in the world behind Venezuela. Nationally, the organisation puts the rate at around 8.9 people in every 100,000.
“Around 150 Tasmanians are living with the disease, with hundreds more at risk,” the organisation said.
Huntington’s disease is a progressive neurological condition that gradually affects a person’s ability to think, speak, move, swallow and carry out everyday activities. There is no cure.
Symptoms usually appear between the ages of 35 and 50 and worsen over 10 to 25 years, the organisation said. Each child of a parent with the disease has a 50% chance of inheriting it.
Independent member for Launceston Rosemary Armitage, who will join participants on Sunday, said many people knew little about the condition.
“Huntington’s disease remains one of the most challenging neurological conditions facing Australian families, yet many people know very little about it,” she said.
“For many families, Huntington’s disease impacts multiple generations.”
“The emotional, physical and practical challenges can be immense, which makes community support and access to services so important.”
She said the walk was about “reminding individuals and families affected by Huntington’s disease that they are not alone”.
“Given the prevalence of Huntington’s disease in Tasmania, rallying behind this community and showing our support makes such a meaningful impact,” she said.
Huntington’s Australia said the walk was designed to be inclusive because many people affected by the disease experience isolation. The organisation provides counselling, peer support, education and help with services such as the NDIS.
Walk 4 Hope began in Parramatta and Newcastle in 2014 and is now held in seven locations across the country.
Funds raised will support Huntington’s Australia’s services for people with the disease, their families and carers.
The Launceston walk has already raised $9,773 surpassing their $8,000 goal.
To donate, go to the website.
