Study into ehealth literacy

Researchers at Edith Cowan University are undertaking a research study investigating health literacy and ehealth literacy in individuals living with neurological conditions and caregivers. The information gathered from this study will help to understand whether health information is being communicated appropriately for people living with neurological conditions. If you would like to participate please visit

Support groups suspended

Due to the current Omicron Covid outbreak, we are suspending all ‘in person’ Support groups during February for the safety of our clients and staff. We hope to resume again in March. Our staff are of course still available if you need support or have questions. We will also be holding an extra ZOOM chat on Thursday 10 February. Registration here.

Roche announce new Phase II clinical trial

Following the disappointing news in March last year that Roche’s highly anticipated drug trial for the HD drug tominersen would be abandoned, we’ve had a more promising start to 2022!

Roche has just announced that they will be starting a new Phase II clinical trial into the drug, which they say appears to have some benefit for “younger adults with less disease burden”.

The new trial will explore the safety and efficacy of different doses of tominersen, although specifics are still being determined. This includes enrolment criteria, planned start date and study sites.

You can read Roche’s full letter to the HD community here.

And if you want to know more, you are invited to join a FREE webinar with the Roche/Genentech team, who will discuss new data from the study regarding tominersen. You will also have a chance to ask questions and hear from Roche and the leadership team at the Huntington’s Disease Society of America, who are hosting the event.

This special 90-minute webinar will start at 6am on Friday 21 January (Queensland time).

You can book your place on the HDSA website ( or via link.

We understand the webinar may be available later for people who are unable to take part in the live stream. We’ll keep you informed when we know more.