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Staying true to our foundations Huntington’s Victoria promotes the opportunity for our community to provide direct feedback on the needs and issues facing them through the avenue of serving on committees. We are extremely fortunate to have a proactive community with a range of capabilities who give their time to share their own invaluable knowledge and experience. This does include those members of the community with lived experience of Huntington’s disease, have loved ones with Huntington’s disease, have friends impacted by Huntington’s disease, are professionals or service providers, or general community members who care deeply about our community! They all selflessly give up their time, have so many fantastic ideas and come with so much passion and commitment, it is always inspiring and they add so much value to all we do. We currently have the following committees:
Our Events and Community Engagement Committee is committed to supporting us to organise and implement events that spread the message of hope and educate the public about Huntington’s disease. Our committee members enable us to receive direct input and feedback from community representatives. The committee promotes and upholds the organisation values of integrity, accountability, collaboration and knowledge.
Jacqui Xuereb
Committee Member
About me
Huntington’s disease is a part of my family with both my mum and grandfather being gene positive
Why did you join the events committee?
I joined the events committee after learning I was gene negative. I wanted to do something to help raise awareness for such a little known disease that has impacted my family so greatly.
What do you enjoy most about being involved in HV events?
I love being a part of a beautiful group of humans that have their lives affected by this illness. Sharing stories and having the support from everyone involved is a drawcard to being involved in HD events. I enjoy sharing my story with the greater community and being able to raise awareness is very important to me.
Elisha Nathan
Committee Member
About me
Huntington’s disease sadly runs in my family
Why did you join the events committee?
I have always wanted to give back to Huntington’s Victoria in some way, and feel like the Events Committee is a social and fun way to get involved in reaching out to the community!
What do you enjoy most about being involved in HV events?
I really enjoy being able to speak about HD openly, and enjoy brainstorming ways that we can reach out and give back to the community.
Katie Elston
Committee Member
About me
My mother passed away from HD in May 2020, after being unwell for 25 years. I’m gene positive and not symptomatic.
Why did you join the events committee?
I have an events background through work and it’s a fun way to get involved with HV. Tammy also lured me with chocolate.
What do you enjoy most about being involved in HV events?
I’ve only just joined! But have always enjoyed HV’s events, so am looking forward to helping out.
Sally Wilson
Committee Member
About me
I come from a Huntington’s disease family
Why did you join the events committee?
To assist Huntington’s Victoria in organising the best events and awareness campaigns as possible
What do you enjoy most about being involved in HV events?
Helping be a part of the community and raising awareness for HD
Tiffany Barker
Committee Member
About me
I grew up in a Huntington’s disease family, my mum was diagnosed when I was pretty young and I was her primary carer. I have also tested positive to Huntington’s disease.
Why did you join the events committee?
I want to make sure everyone in the Huntington’s disease community know where to go to get the support they need. As well as raising awareness about Huntington’s disease throughout Victoria.
What do you enjoy most about being involved in HV events?
I feel so privileged and excited to be able to have this unique opportunity.
Jamie Tozer
Committee member
About me
Huntington’s disease runs in my family
Why did you join the events committee?
To help the Huntington’s Victoria and the community come together
What do you enjoy most about being involved in HV events?
Bouncing around ideas and having a laugh with the other members
Jess Kaplonyi
Committee Member
About me
Initially my experience with HD was through my best friend’s family and growing up with them. I’ve since become a Speech Pathologist, working with people who have HD. At the moment I’m in the process of applying for my PhD which will also be looking at aspects of the HD community.
Why did you join the events committee?
I’ve attended various HV events over the years, always with my best friend Elisha and her family. We always found ourselves leaving events full of ideas for subsequent years, so as soon as they put the call out for expressions of interest, we were quick to jump at the opportunity to share our ideas.
What do you enjoy most about being involved in HV events?
Being part of a team whose purpose is to bring awareness to HD and the community
Emma Sutton
Committee Member
About me
I met Tammy through a project at work where a team of us had the opportunity to provide HV with a social media plan to help encourage engagement. Before this, I had never heard of Huntington’s Disease, and so it was quite an eye opener. For me it was the impact HD has on individuals and their loved ones that captured me and after meeting Tammy and the amazing dedicated team at HV I knew I wanted to help them grow awareness and support the community anyway I could.
Why did you join the events committee?
I joined shortly after attending the 2014 Gala Ball. It is such an amazing event and is incredibly unique in my experience as it has such a wonderful community atmosphere, something you don’t experience at other galas, that when the opportunity came up to help make this night special I couldn’t wait to get started. I really felt the loss of the 2020 gala, but I know the committee will ensure the 2021 event more than makes up for it!
What do you enjoy most about being involved in HV events?
Over the years, the number and types of events that HV offers for the community has really grown and so has the committee! It’s a lot of work but with such a fun and imaginative group of people, it’s been a real pleasure helping make this night special for the community.
Bek Walsh-Donnelly
Committee Member
About me
Huntington’s disease runs in dads side of the family. My great grandmother had Huntington’s disease. My nan had Huntington’s disease and my dad is currently kicking Huntington’s disease butt.
Why did you join the events committee?
I joined to be able to be more apart of HV and the Huntington’s Disease community and keep sharing awareness and give support. It means the world to me to be apart of the HV event committee.
What do you enjoy most about being involved in HV events?
The planning that goes into each event
The community
The joys
The supports
The Fun and memories to be made
NDIS ILC Grant: Huntington’s Community Connect Steering Committee Term
2020-2022
Sally Wilson
Committee Member
About me
Jacqui Xuereb
Committee Member
About me
Robert Pask
Committee Member
About me
I have been involved with advocating for people with progressive neurological illnesses for over 15 years and got involved with Huntington’s Victoria around 10 years ago and started to advocate for them as well as being involved with joint forums with them.
I find working with Huntingtons to be very rewarding and find the staff and the community very dedicated.
In 2013 I was honoured to receive “Huntington’s Victoria Advocacy Award” and also in 2013 I was the recipient of National Disability Awards “Excellence in Advocacy and Rights Promotion Award”.
Peter Ankravs
Committee Member
About me
My awareness of HD dates back to before my late mother-in-law was diagnosed with HD in the early 1990’s.
In addition to the welfare of people suffering HD and the impact on family and friends, I have a specific informal interest in HD research.