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Huntington's Victoria

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Huntington's Victoria

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Huntington's Victoria is dedicated to supporting and assisting those affected by Huntington's disease

OUR MISSION is to sustain a high quality of life for people affected by Huntington’s disease, their carers and their family, while encouraging research towards a cure. OUR VISION is for all people affected by HD live meaningful and hopeful lives as valued members of the community with equitable and timely access to resources and empowered choices for care and support of the highest quality. OUR PRIORITIES are Service Delivery, Information, Advocacy, Research and Sustainability. OUR VALUES are Integrity, Accountability, Collaboration and Knowledge. We aim to improve the quality of life of all people touched by HD in Victoria by connecting families to the vital support and services they need, while supporting people affected by HD to live meaningful and hopeful lives as valued members of the community. We provide access to expert staff that assist in the navigation of the disability service sector, provide relevant information and connect people with respite and support services. We also work with Australian and global healthcare professionals, disability service providers and academics to increase awareness and understanding of HD, as well as the impact it has on individuals, families and communities. Connect with us on twitter:
https://twitter.com/HuntingtonsVic

Join the conversation:
https://huntingtonsaustralia.com.au/

23/09/2026

FAMILY FUN DAY IS BACK!🎡

And this time, we are going out with a BANG, after a year of wonderful events and overwhelming support from the community at each of these events 💙

TICKETS ARE NOW ON SALE
Join us at Luna Park on Saturday 21 November for a day packed with rides, food, laughter, connection and plenty of family fun!

🎢 Unlimited rides all day
🍦 Lunch + snack pack included
🎅 Santa photo opportunity
Exclusive HV marquee & activities | 11am–2pm
Connect with other HD families & our community
Stay at Luna Park all day and keep the fun going!

TICKETS
👨‍👩‍👧‍👦 Family — $99
🧑 Adult — $40
🧒 Child — $35
♿ Senior/Concession — $35

We have worked hard with Luna Park to keep ticket prices as affordable as possible, so families can come together, have some fun and make memories without the day costing the earth. 💙

Saturday 21 November 2026
📍 Luna Park Melbourne
⏰ HV Family Fun Day: 11am–2pm
Grab your tickets and come celebrate the end of another year with your HD community!

Book now via the link below - https://www.trybooking.com/DOMIB

🎡💙Rides. Family. Community. Memories.
We’ll see you at Luna Park! 🥳

16/09/2026

A promising step forward in Huntington’s disease research

Skyhawk Therapeutics has announced the final 15-month results from its Phase 1/2 clinical trial of SKY-0515, an investigational once-daily oral treatment for Huntington’s disease.

At 15 months, participants who received SKY-0515 showed a 1.59-point difference in cUHDRS change compared with a weighted external natural-history control group. Differences favouring SKY-0515 were also seen across measures of daily function, movement and cognition.

The study also reported reductions of more than 60% in mutant huntingtin protein (mHTT) and more than 25% in PMS1 mRNA at the 9 mg dose.

Importantly, these are early clinical results. SKY-0515 is still an investigational treatment and has not been approved to treat Huntington’s disease. The ongoing Phase 2/3 FALCON-HD trials will be important in determining whether these findings can be confirmed in larger, placebo-controlled studies. For the HD community, this is an encouraging development and another important step in the search for treatments that could change the course of Huntington’s disease. 💙

Swipe through to learn more about the results and what happens next.

Click on the link to read the official Statement - https://www.skyhawktx.com/skyhawk-therapeutics-announces-final-fifteen-month-results-from-phase-1-2-clinical-trial-of-sky-0515-in-huntingtons-disease-patients

09/09/2026

🍫THE CHOCOLATE WALK ROUTE IS HERE!

Here's the route we will be taking for our Chocolate Walk! 🗺️✨

We will be making our way through the city, stopping along the way for plenty of chocolatey goodness, good chats and, of course, a long lunch break at Bourke Street Mall. 😋

Our lunch tip: If you are looking for something delicious, we suggest trying one of the paninis from Hector’s Deli kiosk you can thank us later!👀

But this walk is about so much more than chocolate. We are excited to see you all, walk together, connect as a community and make a difference. Every step we take helps raise awareness and support people and families affected by Huntington’s disease.

So bring your walking shoes, your appetite and your best walking and talking energy! 💙

See you on the route!

07/09/2026

💙 Some encouraging movement in HD research!

There is been plenty happening in the Huntington’s disease research space, and we wanted to share two recent updates with our community.

🧬AMT-130:uniQure has submitted applications for regulatory approval of its investigational gene therapy in the US and UK, this is an important step forward as we wait to see what comes next.

💊PRECISE-HD: The first participant has now received treatment in the new Phase 3 trial investigating "pridopidine", marking the start of another important study in the search for new treatments for HD.

What does this mean for our community?

These are exciting developments for the global HD community, but there is still more to come. These updates are not specific to the Australian HD community, and we need to wait for further information from the organisations involved and the relevant regulatory bodies before we know what these developments may mean for people living with HD in Australia. That said, September 2026 is already shaping up to be a very promising month for HD research! We will continue to keep our community updated as more information becomes available.

Want to know more? Read the full updates via the link - https://en.hdbuzz.net/august-2026-this-month-in-huntingtons-disease-research/

01/09/2026

HELLO, SPRING!

Warmer days, longer evenings and plenty to look forward to! 💙 As we welcome the first day of spring, we also wanted to give you a little reminder about two exciting events coming up!

MOVE4HD CHOCOLATE WALK - https://www.trybooking.com/DMRVH

We are SO grateful for the overwhelming support you have shown for our Chocolate Walk! Due to popular demand, we have increased ticket numbers to 100 — so if you missed out before, this is your chance to join us! 🍫🚶‍♀️

FAMILY FUN DAY AT LUNA PARK - https://www.trybooking.com/DOMIB

Get ready for our most fun day of the year! Join us at Luna Park on Saturday, 21 November for a day of fun, laughter, connection and community!

Tickets for both events are available now! Get your's by clicking on the links.

Here’s to warmer days, sunshine, summer vibes and making more memories together!

Happy Spring, everyone!🌷✨

10/08/2026

🍫💙 THE MOVE4HD CHOCOLATE WALK IS ON!💙🍫

Ready to move, connect, eat chocolate and make some memories?

Join us on Saturday, 12 September 2026 for a slow-paced 4K walk through Melbourne C*D, with chocolate stops along the way!

📍 Meet: IL Mercato Centrale, 546 Collins Street
🕥 Arrive: From 10:30 AM
🚶 Walk starts: 11:00 AM
🍫 Finish: Brunetti Oro, Flinders Lane
🎟️ Tickets: FREE!

This isn't a race. It’s a chance to move together, meet new people, reconnect with our HD community, share stories, have a laugh and inspire one another. Put on your Blue Brigade gear, bring your walking shoes and come show the world the strength, resilience and spirit of our Huntington’s disease community.

And yes… of course we will be walking past chocolate shops, guided by our inhouse choc-addict, Tammy Gardner, you can purchase whatever chocolate you would like to take home!

🎟️ BOOK YOUR FREE TICKET NOW - https://www.trybooking.com/DMRVH

No one walks alone 💙

07/08/2026

Some acts of kindness can't be measured in dollars.

This letter is our way of saying thank you to the incredible team at The Firehouse, Ringwood and Instagram food blogger, Mikes Likes for choosing to support Huntington's Victoria through their community hamburger fundraiser.

Fundraising is important, but so is something that's harder to measure: every conversation started, every question asked, every person who walked away knowing a little more about Huntington's disease.

For someone living with Huntington's disease, caring for a loved one, or carrying the gene, seeing their local community stand beside them can be a powerful reminder that they are not alone.

To everyone who ordered a burger, shared a conversation, donated, or simply stopped to learn more—thank you. Your support is helping make Huntington's disease more visible, reducing stigma, and building a kinder, more connected community.

Together, we're making a difference, one conversation at a time. 💙

04/08/2026

What can we say... we are still riding the Community Conference high! 💙✨

Here's one last reel packed with some of our favourite moments from an incredible day spent learning, connecting, laughing, and celebrating our amazing Huntington's disease community.

Thank you to everyone who joined us and made the day so special. Your stories, smiles, and support are what make this community so incredible.

We promise... this is the last conference post. 😂 We swear we'll stop spamming your feed now!

Until next time... we can't wait to see many of you at the Chocolate Walk! Bring your comfy shoes, your sweet tooth, and your biggest smiles. 💙

03/08/2026

💙 Thank You for Joining Us at the Huntington's Victoria Community Conference 2026 💙

To everyone who joined us on Saturday, thank you for making our 2026 Community Conference such a meaningful and memorable day. It was wonderful to come together, reconnect with familiar faces, meet new members of our community, and share conversations centered on support, wellbeing, and hope.

A heartfelt thank you to Professor Anthony Hannan for so graciously hosting us at the Institute. We are incredibly grateful for your generosity and ongoing commitment to the Huntington's disease community.

We are also incredibly grateful to each of our guest speakers, who generously gave their time to present, participate in interviews, collaborate throughout the planning process, and help make this event such a success. Your expertise, passion, and willingness to share your knowledge made a lasting impact on everyone who attended.

We would also like to sincerely thank for their generous donation. Every contribution, no matter the size, goes a long way in helping Huntington's Victoria continue our work and ensure we are doing the very best we can for our community.

A special thank you to Hanne Files from for the beautiful bracelets, and to for providing the conference bags and for their ongoing support.

Your feedback is invaluable to us. If you have any questions about the topics discussed at the conference, or suggestions for future conference sessions and events, please scan the QR code and share your thoughts with us. We would love to hear from you.

Thank you for being part of our community. We hope to see even more of you at our upcoming events as we continue to learn, connect, and support one another. Keep an eye on this space for more events, opportunities, and ways to stay connected.

Address

Suite 301/546 Collins Street
Melbourne, VIC
3000

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+61398186333

Website

http://huntingtonsvic.org.au/

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