Huntington's Victoria

Huntington's Victoria 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 PR

IORITIES 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/

02/06/2026

💜 What a wonderful way to close out May Awareness Month! 💜

Thank you to everyone who joined us for May Mingle and helped make it such a special evening. It was wonderful to see community members reconnect, build new friendships, share stories, and enjoy meaningful conversations in a welcoming space.The evening was all about coming together and creating an opportunity to share stories, have relaxed conversations, and meet others who resonate with emotions.

Throughout May, so many of you helped raise awareness of Huntington’s disease by sharing your experiences, attending events, fundraising, advocating, and starting important conversations. Every contribution helped strengthen our community.

At Huntington’s Victoria, we believe community connection is one of the most important parts of living well with Huntington’s disease, and we look forward to creating many more opportunities to come together throughout the year.

Thank you for being part of such a positive and connected May Awareness Month. 💜

29/05/2026

Its May mingle day! Just a quick how to get there!! Excited to see you all 🩵🍫

FINAL MAY MINGLE UPDATE ✨The wait is over, let us all come together and celebrate the community, end of the May Awarenss...
28/05/2026

FINAL MAY MINGLE UPDATE ✨

The wait is over, let us all come together and celebrate the community, end of the May Awarenss month!

Ticket holders, please check your email inbox for all final event details including venue information, timing, and how to get there.

You can also refer back to our previous posts for directions and arrival details.

We can’t wait to see you tonight 💫

💜 Ticket Sales Now Closed 💜Thank you to everyone who secured a spot for tomorrow’s event, we are so excited to see you!I...
28/05/2026

💜 Ticket Sales Now Closed 💜

Thank you to everyone who secured a spot for tomorrow’s event, we are so excited to see you!

If you already have a ticket, please swipe through the images in this post for important information on parking and how to get to the venue.

🚗 Please note there is limited on-street parking available nearby, so we encourage you to plan ahead.
🚆 If you are travelling via public transport, please check your PTV app before starting your journey to allow plenty of time for any updates or delays.

We can’t wait to come together for an evening of connection, community, and conversation. See you tomorrow! 💜

💜 May Mingle Event! An evening of connection, conversation & community 💜This year’s May Mingle on the 29th of May 2026 i...
27/05/2026

💜 May Mingle Event! An evening of connection, conversation & community 💜

This year’s May Mingle on the 29th of May 2026 is centered around three key themes that reflect the heart of our community.

We will begin with a re-introduction to what HCC is and the work we continue to do in supporting individuals and families living with Huntington’s disease, building connection, access, and meaningful support across every stage of the journey.

We are also pleased to welcome special guest Anthony Clarke from Bloxas, who will be sharing insights into intuitive housing and how designing homes that better respond to individual needs can significantly improve quality of life for people living with HD.

The evening will also look ahead to share and discuss upcoming and future events, continuing to grow and strengthen our community together.

We look forward to seeing you there for an evening of learning, connection, and celebration. Book your tickets they sell out, click on the link - https://www.trybooking.com/DKYZY

🚨 MYTH vs FACT: Clinical TrialsMYTH: “Anyone with a positive genetic test can automatically join a clinical trial.”FACT:...
23/05/2026

🚨 MYTH vs FACT: Clinical Trials

MYTH: “Anyone with a positive genetic test can automatically join a clinical trial.”

FACT: Each clinical trial has specific inclusion and exclusion criteria designed to protect your health and ensure the study is appropriate for your stage of condition and overall wellbeing.

💡 This is why looking after your overall wellness and brain health matters. Staying physically active, supporting mental wellbeing, managing stress, maintaining good sleep, good diet, active lifestyle (as much as you can without pushing yourselves over the limit) and staying connected with your healthcare team can all help you remain as strong as possible when exploring clinical trial participation. Even with a positive genetic test result, participants must still meet clearly defined medical requirements before joining a study.

💡 Clinical trials are not just about treatment—they are about supporting safe, informed participation while people continue to prioritise quality of life and long-term wellbeing. Clinical trials are not just a “last resort”

👉 Like, share, and tag your family & friends to help spread awareness about how clinical trials really work. If we see strong support, we will continue this as a regular series! 💙

22/05/2026

Today, our community showed up in blue, stood together, and celebrated what truly matters most — each other. 💙

is more than an awareness campaign. It is a reminder that we are united in this race for a disease-modifying therapy for Huntington’s disease, while continuing to uplift one another and be a source of strength, hope, and support through every step of the journey.

To every community member, allied health professional, HD specialist, researcher, advocate, family member, and friend who made the effort to honour and acknowledge this community today, thank you. Your presence, compassion, and commitment mean more than words can express.

As one of our beautiful community member said: “For my mum, for myself and for the Huntington’s disease community", may we always remember what matters most, it is the idea that you are never alone.

#

May Awareness is about sharing stories, spreading knowledge, and standing together in advocacy.In this important convers...
22/05/2026

May Awareness is about sharing stories, spreading knowledge, and standing together in advocacy.

In this important conversation, Huntington’s Victoria CEO Tammy Gardner speaks with Professor Julie Stout about the MAP-HD project and what it means for the Huntington’s disease community.

Professor Stout shares key insights from international research into the cognitive, motor, psychiatric, and brain changes in Huntington’s disease and how this is reshaping how we understand diagnosis.

Tammy highlights the ongoing importance of quality of life for families today, alongside continued progress toward disease-modifying therapies. Together, they reflect on why participation in MAP-HD matters, and how shared learning and lived experience continue to drive research forward.

This May, we share stories to connect, learn, and advocate for one another.

Watch the full conversation in our newsletter or click on the link - https://mailchi.mp/huntingtonsvic.org.au/jstout-ep09-beyond-the-lab-10156090

💙 SHEDSONG TURNS BLUE FOR HUNTINGTON’S DISEASE 💙Huntington’s Victoria would like to sincerely thank for turning blue ov...
21/05/2026

💙 SHEDSONG TURNS BLUE FOR HUNTINGTON’S DISEASE 💙

Huntington’s Victoria would like to sincerely thank for turning blue over two beautiful nights in support of Huntington’s Disease Awareness Month and .

On May 20th and 21st, the Shedsong community came together through dance and choir to raise awareness for Huntington’s Disease, a progressive, fatal, and currently untreatable genetic condition that affects both men and women, and impacts entire families across generations. Each person living with HD has a 50% chance of passing the gene on to their children.

💃 May 20th – “I WANNA DANCE WITH SOMEBODY” Dance Class (sadly over)
🙏 May 21st – “I SAY A LITTLE PRAYER” Scrappy Choir (Strongly urge you to go if you are in Ballarat area)

We are deeply grateful to Amy and the Shedsong community for encouraging participants to wear blue and for generously donating $5 per attendee across both nights. Your kindness and support mean so much to families living with HD 💙

Moments like these remind us that awareness is powerful and no family should feel alone.

💙 We also invite other community groups, studios, gyms, and local spaces to join us. Wear blue, dedicate a class, start a conversation small actions create real change and help keep Huntington’s Disease visible.

Thank you, Shedsong Ballarat, for standing with us 💙

30/01/2026

🍴 Victorian families of individuals with pre-manifest Huntington’s Disease - this one’s for you!

We are excited at the opportunity to bring the Brian Bites Project to the Victorian families living with Huntington's Disease. A one-time, one-week Mediterranean meal box designed to support healthy eating, cooking independence, and wellbeing for families affected by HD.

What’s involved:

💬 Chat online with the research team
👩🍳 Join a fun online cooking session with a chef who has lived experience of HD
📸 Cook, snap, and share your thoughts - all from home!

💚 Made in Victoria. Inspired by You.

This is a unique chance to try a locally prepared meal kit, share your feedback, and play a part of in shaping the future of supports provided to everyone living with Huntington's Disease.

Click on the link below and know more : https://huntingtonsvic.org.au/2025/10/29/brain-bites-info-newsletter-oct25/

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

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