CEO Update

March 2022

Dear valued community members and colleagues,

As COVID restrictions begin to wind down, it is timely to reintroduce the CEO updates to provide you all with regular reports on the work HV has been involved in on behalf of our community. This year has already been very busy and I am excited to have the opportunity to share news with you in relation to the introduction of a new service, the launch of Australia’s first HD online peer to peer forum, May awareness activities and the HV Gala ball.


Counselling Program

The last two years has been challenging for us all with the

ongoing impacts of the COVID pandemic in addition to living with HD. To assist our community through these difficult times Huntington’s Victoria, on the 14th of February, launched its own counselling program. To celebrate this launch we are offering free counselling support to community members nationwide from March to the end of June 2022.

We will be offering a minimum of 1 session to a maximum of 6 sessions which will be confidential and offered via various avenues including online (Zoom/Teams), phone or in person. Please contact our Information & Support team for further information or to request a session via our website.


The building and development of the HCC forum has been a labor of love and it is with great please that in collaboration with Community Steering Committee, that I announce the upcoming launch on the 16th of March 2022!

The HCC has been created in response to the challenges and barriers identified by our community members that prevented access to traditional face to face support groups. Therefore, HCC is designed for building connections across the HD community, and to provide the information required for individuals and groups to be able to speak up or advocate for themselves particularly when dealing with service systems.

I want to take this opportunity to express my appreciation to our partners, the NDIS Information, Linkages and Capacity Building (ILC) Program, Monash University, stakeholders involved in the gap analysis and the HCC project community steering committee whose expertise , resourcing and participation has been invaluable.

I would encourage you to participate in the HCC as well as share this news with your family, friends and support networks who may benefit from the forum. The HCC is a forum created by the community for the community and is led by a group of volunteer community Peer Leaders who will be available to assist members navigate the forum and engage in supportive discussions.

In addition to the community connection, the HCC will also provide an avenue for the ongoing delivery of current information, access to tailored counselling-based group workshops and the availability of online education modules to build understanding of the impacts of HD. HV staff will be available to ensure that the forum remains a safe space for everyone.

The HCC is a safe space open for anyone 18 years old and above. If you’re interested in receiving updates including when the forum goes live, please complete the Expression of Interest Form.

9th HV Gala Ball

As the COVID restrictions have started to ease, I am thrilled to announce the much-awaited return of the HV GALA Ball on the 6th of May 2022. The last two years have been particularly difficult for us all as we continue to deal with the challenges and uncertainty arising as a result of the COVID Pandemic. We have all missed the opportunities to have in- person contact and to dance and sing together at the Gala Ball.

The HV Gala Ball is an event not to be missed!

By attending the HV Gala Ball, you will be supporting Huntington’s Victoria by raising vital funds to enable ongoing delivery of essential services. The evening will include three course meal, drinks, live music, entertainment, live auction, lots of fun and most importantly, an opportunity to mingle and hear directly from community members living with HD.

If you are unable to attend this event but would still love to support the HD community, please consider buying a table and/or seat for community members, participating in online raffle and auction and/or making a donation to Huntington’s Victoria.

Watch our Gala Ball video to have a glimpse of the fun we have at a HV Gala Ball!

6th May Awareness

Every May, we hold HD Awareness month to honour the people living with HD, their families and the ones we have lost.

I am excited to present a number of events taking place throughout the month of May which include:


Light it Up 4 HD

On the first and second weekend of May, HV will join other HD organisations around the world and light up landmarks across Victoria in Blue to shine a light on Huntington’s Disease.

Go Blue on May 22

Join us for our 4th Go Blue on May 22 Campaign, a Huntington’s Victoria initiative, created in collaboration with our community. All members of the community are welcome, regardless of their location to participate in raising awareness of the impact of living with HD. Dress up in blue, download one of our posters, and post a pic on social media to help us spread the word.

I look forward to reporting to you again in the couple of months and I hope to see you in person in our upcoming events.