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Speech Disorders in Huntington’s Disease

Speech Disorders in Huntington’s Disease Jess ChanSpeech Pathologist & PhD CandidateThe University of Melbourne I am working on building a precise description of the changes in speech that occur early in Huntington’s disease Why is speech important in Huntington’s...
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...
Positive developments in the search for a HD treatment

Positive developments in the search for a HD treatment

Positive developments in the search for a HD treatment Fri December, 18th 2020 Researchers are making significant progress in the hunt for ways to treat or prevent HD with an increasing number of clinical trials planned to test promising new drugs. That was the...
Community conference to be held in December

Community conference to be held in December

Community conference to be held in December Fri August, 21st 2020 The 9th annual HV Community Day is being turned into a two day virtual conference this year. Huntington’s Victoria CEO Tammy Gardner said the COVID-19 pandemic would not stop the expanded event going...
Grant to fund research and new services

Grant to fund research and new services

Fri July, 17th 2020 New research involving the HD community is set to begin after Huntington’s Victoria secured grant funding from the NDIS Information, Linkages and Capacity Building (ILC) program. The research will aim to take a closer look at the prevalence of HD...
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,...
Landmark HD gene therapy trial begins

Landmark HD gene therapy trial begins

Mon June, 29th 2020 The world’s first Huntington’s gene therapy trial is underway, testing a one-off treatment that could slow the progress of the disease for years or even decades. Two people with HD have been the first to be treated as part of the trial in the...
Huntington’s and our family

Huntington’s and our family

Fri June, 19th 2020 The Ferguson family knows all about the heartbreak of HD. The disease has taken eight members so far, across multiple generations. In the video below, family members share their memories of two of the people who have passed away, Wally Ferguson and...
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...