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An open letter to the Australian Huntington’s community

An open letter to the Australian Huntington’s community

Fri March, 26th 2021 On 23 March 2021, the news began rolling out across the world that Roche would stop administering the treatments or placebos to patients in the GENERATION HD1 trial. More information will become available in the next weeks and months. The news...
Taking part in a HD clinical trial

Taking part in a HD clinical trial

Thu July, 9th 2020 For Nick Scullie the decision was, in the end, a simple one. Offered a place in a clinical trial of a promising new drug to treat Huntington’s disease he knew he had to say yes. “It was a little bit daunting, not knowing what was going to happen,...
Signs of HD found 24 years before symptoms

Signs of HD found 24 years before symptoms

Wed June, 17th 2020 Small changes in the brain caused by Huntington’s disease are detectable 24 years before symptoms emerge, new research shows. Researchers believe the findings will assist in identifying how early treatment should begin for people who have the...
Rising number of younger people with HD in nursing homes

Rising number of younger people with HD in nursing homes

Fri April, 24th 2020 New figures reveal a growing number of younger people with Huntington’s disease are living in residential aged care in Victoria. The Australian Institute of Health and Welfare data shows in total there were 331 people with HD in residential aged...
Running for HD

Running for HD

Kirsty Pleiter knows firsthand the devastating impact Huntington’s disease can have on a family. Growing up she saw how it affected her aunt Lyn, who was in care, and passed away in 2009. She is close to Lyn’s two daughters, Lizzie and Kelly, both of whom have now...