WE HAVE EXCITING NEWS!

Huntington’s Queensland has been selected (along with the Carl Web MND foundation) to receive the proceeds of the Sporting Legends Rugby League Charity game on Saturday October 14.

This is a great opportunity to witness NRL legends in their element while supporting Huntington’s Queensland.

Visit Ticketek to purchase tickets to what will be a fun afternoon. 🏉

https://bit.ly/hqfootball

As part of our mission to provide the best services we can to you and our HD community, our team is seeking your feedback on our services.

Please complete the survey, which should take about 10 minutes.  We would appreciate your honest opinions to help to improve our services.

Your feedback will help to shape the work we do with you, your family, and many others.

The survey will close at 5pm on Monday 25 September. All responses are anonymous.

We are excited to announce the opportunity for people to become involved in the Sage pharmaceutical study in Brisbane. Please contact the Neuroscience team below for more information.

“The Sage Pharmaceuticals Study is a 4-month pharmaceutical trial focusing on the impact of a new medication on cognitive function in individuals with early manifest Huntington’s Disease.

• Eligible participants should be between 25 and 65 years old and in good overall health.
  
• Participants will need to take the study drug daily and attend the University of Queensland Centre for Clinical Research (UQCCR) study clinic at the Royal Brisbane and Women’s Hospital (RBWH) campus approximately 8 times during the 4-month period for various assessments.

More information about the study can be found online at: https://clinicaltrials.gov/search?term=NCT05107128.

 If anyone is interested in learning more about this study, please feel free to email the Neuroscience team at neurotrials@uq.edu.au.

As a valued member of our community, we continue to keep you up to date with Huntington’s Australia (HA) developments.

Huntingtons Queensland and HA have sought legal advice regarding the transfer and sharing of information for members, clients, supporters, donors and partners. Considering we have set up the new national organisation to support people affected by Huntington’s disease, it is deemed an entity whose primary purpose continues that of the State and Territory entities. Information from all state-based entities will be transferred to Huntington’s Australia on 1 October 2023. You are not required to do anything, as we will do this on your behalf. However, if you do not want us to pass your information to Huntington’s Australia you will need to provide your name and email on the Opt-Out Form by 30 September 2023.

Staff from State Associations that are moving to Huntington’s Australia have been provided with official HA employment offers.

HA has provided draft Transfer Deeds to each State. Huntingtons Queensland and HA are working through this to outline all matters pertaining to the transfer of assets and liabilities.

Please click here for the full update from Chris Glasson, Chair HA.

As a valued member of our community we would like to share information from Huntington’s Australia around the transfer of data. Part of the merger implementation plan is to create one system to carry all of our data, which will make it easier for our families and staff to work together across the states. If you do not want us to pass information across you will need to fill in to opt-out form.

A new imaging tool means that scientists can now directly measure the levels of the toxic huntingtin protein in animal models of Huntington’s disease. HD Buzz explain

Due to the current weather emergency in South East Queensland our staff will not be in the office for the next few days. We are of course available via phone or email, so please leave a message and we will contact you as soon as possible. Stay safe everyone!

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 https://redcap.link/miikb66x