Discovering that Huntington’s disease is a part of your genetic history can have a ripple effect on your life and those around you. All at once you can experience a rush of emotions: anger, sadness, confusion, isolation and disconnection from those closest to you to name a few. In response Huntington’s Victoria made a commitment to facilitate the Huntington’s Community Connect (HCC) peer forum and host a number of standard events to provide direct access to credible information and an opportunity to connect to those individuals with lived experience. Furthermore, in collaboration with the Huntington’s community the Blue Brigade was created to foster community connection and sense of belonging through identification as a proud member of the brigade. You are welcome to join the Blue Brigade; merchandise is available for purchase via our online store.
The HCC and Huntington’s Victoria events have been created to meet the needs of all members of the Huntington’s community regardless of their status. Please find below an outline of the HCC and a list of our standard Huntington’s Victoria Community Events for your information:
In 2022, Huntington’s Victoria launched the Huntington’s Community Connect (HCC) Forum, the first Australian Huntington’s Disease peer forum created “by the community for the community”. The HCC was developed in response to identified obstacles for accessible credible peer support. The HCC is a safe virtual space available for anyone, 18 years old and above who are impacted by Huntington’s disease regardless of their location. The HCC is supported by volunteer community peer leaders and the forum is facilitated by Huntington’s Victoria team members.
Learn more about the HCC here…
Internationally, May is the awareness-raising month for Huntington’s disease (HD). The driving force behind the May awareness campaign is to provide all members of the Huntington’s community with an opportunity to connect and learn from each other as well as educating others not directly impacted by Huntington’s disease. Huntington’s Victoria was the first Australian Huntington’s disease specific organisation to join the May Awareness campaign in 2004 which has now expanded to include Light It Up for HD and Move For HD since 2017 in addition to Go Blue May 22 since 2019.
Learn more about May Awareness here…
Huntington’s Victoria hosted the first Gala Ball in 2012 in collaboration with the Huntington’s community who wanted to be able to attend a formal safe event without the fear of discrimination and have the opportunity to share experiences with individuals like themselves.
This premiere annual event is a gathering for community members directly impacted by Huntington’s disease and intends to raise vital awareness. Attendees include medical and research partners, allied health professionals, corporate partners, supporters and most importantly the Huntington’s community. If you have not attended an event before please do so you are most welcome.
Learn more and book your tickets here…
Join the HV team and other members of the community for fun activities and photos as we witness AAMI Park Light up in blue for HD.