Huntington's Community Connect - Recent Topics

Huntington's Victoria Community Conference

Sue B — Sat, 11 Jul 2026 05:24:06 +0000

The Huntington's Victoria Community Conference is on again this year, 1st August 2026 10.30am till 3pm. The Topic this year is Living with Huntington's Disease and its impact on various facets of one's life. Whether you are new or familiar to the Huntington's Community this event is for everyone who is impacted by this disease. Contact Huntington's Victoria Information Team if you require any further information or you can book via the Events section on this page. I will be attending so come and say Hello on the day. Take care and Stay strong.

National Chocolate Day

Sue B — Tue, 07 Jul 2026 05:15:39 +0000

For all you sweet tooths, just letting you know it is World Chocolate Day today, so pop out and give yourselves a well earned treat. I'm off to get some chocs now. Have a lovely day.

Huntington's Disease Awareness Month 2026

Shreesha Venkateshwaralu — Wed, 06 May 2026 06:32:40 +0000

May is here and with it, Huntington’s Awareness Month 💙

This month is about you. About coming together in whatever way feels right—whether you are living with Huntington’s disease, at risk, gene positive, a family member, a friend, or someone supporting the community through your work - You belong here!

#LightItUp4HD: Reach out to local businesses and government organisations to light buildings blue. If that’s not possible, we can help with signage or screen displays.

#GoBlueMay22: On May 22nd, 2026, join the “Blue Brigade” by wearing blue and showing your support.

#MayMingle: Wrap up the month with us on May 29th 2026, in Melbourne CBD for an evening of connection, food, and conversation.

Check out the video to find out how you can participate!

Hello

Browneyes — Sun, 22 Mar 2026 03:13:22 +0000

Hello my name is Kylie I am a female symptomatic HD I a member while ago but haven't been on for a few yrs I would just like to say hello again

I'm new

jenny — Mon, 12 Jan 2026 06:00:21 +0000

Hi Everyone, I am new to the forum. My husband was diagnosed with Huntinghtons about 2 years ago, but on reflection we think he may have had symptoms which we didn't recognise for about 10 years. I am trying to process a lot of grief at losing parts of my partner of 60 years. He has serious mood swings and some memory loss. He is often difficult to deal with if he doesn't agree with what we are doing. eg. a different television program from the one he wanted to watch. He is very old to be still alive with the disease (79) and deliberately does not acknowledge his physical symptoms eg. difficulty in walking and controlling his hand movements. I think he is also grieving but won't admit it.

Ollie's bike ride

Shreesha Venkateshwaralu — Thu, 04 Dec 2025 03:42:53 +0000

Hello everyone,

We are excited to share an inspiring initiative from one of our community members, Oliver Scalzo, an avid cyclist who has decided to channel his passion for empowering families with Huntington's Disease and biking into an incredible awareness effort: biking around Albert Park Lake for 24 hours straight. His message is simple but powerful — “movement matters” Whether it’s managing the physical symptoms of HD, supporting mental health, or improving overall wellbeing, staying active can make a meaningful difference for everyone.

Growing up in a family touched by HD, Ollie holds a heartfelt belief: people cope best when they feel supported in ways that genuinely matter to them. At Huntington’s Victoria, we could not agree more. Having Ollie reach out to us, share this idea, and help bring this awareness campaign to life has been a joy to watch. His initiative as a young adult is a reminder of the strength within our community — from individuals living with HD to the families and loved ones who walk alongside them.

If you would like to share a message of support for Ollie, please let us know and we will be sure to pass it on.

Hoping to show Ollie how much it matters that he is being a voice for the community!

Thank you all,

HV team :)

Luna Park

Sue B — Mon, 10 Nov 2025 23:17:16 +0000

Just a reminder that the next Community Event is soon approaching. Tickets are still available for a fabulous day out at Luna Park which is on Sat 22nd from 11am till 2pm. Check out the HDVIC Events page for more info. I'm definitely going but you will only see me at the fun amusements as the rides are all too scary for me. I hope to see you there as it's a great day.

Take care. Sue {blue}:inlove:

Latest Research Update

Sue B — Fri, 26 Sep 2025 05:16:49 +0000

If you haven't already signed in or checked out the HDBUZZ website I would recommend that you do. You can also click on the latest news link on the hdvic site and scroll down to Latest Headline From HDBUZZ. AMT-130 Gene Therapy slows Huntington's in Landmark Trail. There is also an online article in Friday 26th Sept edition of the heraldsun which includes comments from Tammy (CEO of Huntington's Victoria) I believe that this is worth a read and gives me HOPE for the future.

2025 Gala Ball

Sue B — Tue, 26 Aug 2025 07:50:27 +0000

Huntington's Victoria's 2025 Gala Ball is only a few weeks away, and there are still a few tickets available. If you haven't attended one of these events yet, I thoroughly recommend that you consider it as they are amazing. It's a great opportunity to connect with other community members while eating, drinking and dancing the night away. If you do decide to attend, please come and introduce yourselves to me (if I haven't met you already). I'll be on table 10.

Take care and stay strong.

Sue

{blue}:inlove:

Cannabis oil

Roxy60 — Wed, 23 Jul 2025 20:11:49 +0000

Hi,I have just joined and was wondering has anyone used cannabis oil been used to treat mood swings and depression ? My husband is not showing any physical symptoms but he just is very short tempered I feel that he just gets overwhelmed and needs calming down without taking antidepressants. I have been doing a lot of reading about the oil and it seems to help. Any information would be greatly appreciated.