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 :) 

Take care and stay strong.

Sue

{blue}:inlove:

I hope to see you all there.

Take care and stay strong. {blue}:inlove:  

Rang Huntington's Victoria today with the hope of drawing on their knowledge and expertise regarding accomodation providers and Speech therapists with experience dealing with HD.  The response was given that my sister had another support co-ordinator they would not be able to provide this information even though i am a family memeber of someone with Huntingtons disease.  they may claim to be not for profit but sure seems like they will only assist if they can ensure they are getting funded out of your NDIS plan.

So much for supporting the family every step of the way

My wife was diagnosed last year and I was wondering if there any carer support groups? It is difficult to know what support to give while she is non symptomatic. She is incredibly resilient but we are fighting a lot about seemingly insignificant things and I can't help but think the underlying cuase is the diagnosis and us not knowing what to do

This time of year may be a struggle for some with loved ones no longer with us, whether that be in hospital, living away from us or gaining their warrior wings, but I believe that they are always in our thoughts and hearts. Please remember to take care of yourselves and each other.

You are not alone, and it is ok to ask for help. Take care {blue}:inlove:  

 I want to ask another question before I forget! 😀 

How do I approach telling my HD to my 6 year old son?
Are there good therapists that could help me that understand huntington's/able to approach it?

My Dad approached it TERRIBLY! And I want to do it better, but don't really know how to. And what supports does he need to go through this big news?

Thank you,

Frances.

First time poster here. I was wondering if I could get some advice.
I have Huntington's Disease and am starting to show symptoms. It has taken some time for me to admit that to myself.
I don't have any friends or family to support me.

I am very isolated and wanting any and all the support.

My mum had symptoms as early as I can remember her.
Back then I was her carer. And there wasn't much support if any for her or myself. And it was a massive struggle for the both of us!
I am hoping it's different now. But where do I look for these supports and where do I ask?

What supports are out there and how do I find them?

I hope this made sense!

Cheers,

Frances.