Huntington's Victoria in Melbourne, Victoria, Australia | Non-profit organisation

Huntington's Victoria

Locality: Melbourne, Victoria, Australia

Phone: +61 3 9818 6333

Address: 16 Wakefield Street 3122 Melbourne, VIC, Australia

Website: http://huntingtonsvic.org.au/

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23.01.2022 UPDATE: As promised, please find an update in relation to the Roche trial. https://huntingtonsvic.org.au/an-open-letter-to-the-austra/

20.01.2022 Do you have a friend or family member who wants to attend our community conference but may have trouble accessing it? Feel free to contact us and we'll see if we can help! https://www.huntingtonsvic.org.au/even/community-conference

19.01.2022 It is R U OK Day today and it’s a great opportunity to check in with somebody you care about. We need to look after each other particularly given everything that is going on in Victoria right now!

18.01.2022 Don't miss it, sign up here! https://www.huntingtonsvic.org.au/even/community-conference

17.01.2022 A message from our CEO Tammy Gardner: This isn’t any easy time for any of us. I know it is particularly hard for families with loved ones in nursing homes and hospitals.... So I just want to reassure you we are here to help in any way we can. Please don’t think you have to go through this alone. Our team members are all working and available to provide any support and assistance you need. You can still contact us on the office number 03 9818 6333 or [email protected]. Can I also say on behalf of our team how grateful we are for the people working on the frontline through this pandemic. A big thank you to all those working across the health and community sectors from us. You are making such sacrifices and putting your own health and safety at risk and we really appreciate it. And thank you to everybody doing the right thing in the community. We are living in unprecedented times and it is test for us all. Thank goodness nothing has happened to the chocolate supplies yet! Please take care, Tam

17.01.2022 Well done to the community in Tassie for bringing essential awareness of HD and the issues their people face in accessing healthcare during COVID-19.

16.01.2022 We have a new feature researcher on our website. Pubu Abeyasinghe works at Monash University. you can check out her latest research on our website. https://www.huntingtonsvic.org.au//pubu-abeyasinghe-pubudi

15.01.2022 Jacqui tells the story of her family's battle with Huntington's disease and the uncertainty and fear she experienced knowing she might have inherited the gene that causes it. Our heartfelt thanks go to Jacqui and her family for sharing their story.

15.01.2022 We are again, honoured and privileged to remember our community members that we have lost. Your life mattered and you will always be remembered.

15.01.2022 We see blue, we see you #Lightitup4HD . . . .... Crown Melbourne See more

14.01.2022 HD Awareness month is only a couple of weeks away, starting May 1 and we have lots of events throughout. Check out more details of how you can get involved at: https://huntingtonsvic.org.au/hd-awareness-month/

14.01.2022 If you came to our Community Day in 2019, you might remember the neurobalance demonstration given by Paris. In the spirit of keeping active during COVID-19, Paris will be hosting some Dance for Wellbeing classes via zoom. Check out the details below.

13.01.2022 This moving video highlights the achievements of pioneering HD researcher Dr Nancy Wexler. While the disease is now impacting on her speech and movement, it has not diminished her resolve to find treatments and a cure. This video was produced by the US arm of Roche.

13.01.2022 Through the blue lights this weekend, we shine a light on Huntington's disease and honour the people living with it, their families and the ones we have lost. Thank you for lighting up blue this weekend: Development Victoria Transurban Crown Melbourne... Melbourne Star Observation Wheel City of Melbourne Wodonga Council #LightItUp4HD #HDawareness See more

13.01.2022 Further update from HD Buzz, on the Wave clinical trial cancellations, how it relates to the news from Roche and the future for trials. https://en.hdbuzz.net/301

13.01.2022 Here’s a reminder from our counsellor Jo Bevilacqua about why you really should attend the 2020 HV Community Conference next month. (No it’s not just because Jo’s a speaker!). Register for the conference here:https://us02web.zoom.us//6416019/WN_iF1OFV0SR7iHY-Ns4EdYkg

12.01.2022 Global HD advocate and former war reporter Charles Sabine has made a new documentary, Dancing at the Vatican. The documentary tells the story of dozens of HD sufferers from Latin America who made the journey to Italy to meet Pope Francis in May 2017. Find your tickets here: https://www.eventbrite.com.au/e/dancing-at-the-vatican-aust

12.01.2022 For those who want to be involved in discussions following the news that Roche is discontinuing the clinical trial, please see the below links for registering. The equivalent Australian times are mostly during the nighttime here, however we understand HDYO will repost recordings for those who are unable to participate live. 1. First discussion: Friday 26th 2am for Vic, NSW & Tas; 1am for QLD; 1.30am for SA & NT; Thurs 25th 11pm for WA. 2. Second discussion 2: Friday 26th 6am ...for Vic, NSW & Tas; 5am for QLD; 5.30am for SA & NT; 3am for WA. 3. Third discussion: Friday 26th 8.30am for Vic, NSW & Tas; 7.30am for QLD; 8am for SA & NT; 5.30am for WA. 4. Fourth discussion: Saturday 27th 3am for Vic, NSW & Tas; 2am for QLD; 2.30am for SA & NT; 12 midnight for WA 5. Fifth discussion: Sunday 28th 7.10am for Vic, NSW & Tas; 6.10am for QLD; 6.40am for SA & NT; 4.10am for WA. https://www.facebook.com//a.2469106053842/5159442094131066

11.01.2022 We see blue, we see you #lightitup4HD . . . .... Transurban See more

11.01.2022 One week to go! Here is a run down of the topics covered on each day of the conference. It's not too late to register. Saturday, December 5 - 2pm Start - There is no right or wrong when it comes to testing - Growing up in a HD family... - A personal perspective on living with HD - Having the conversation about HD - International Research featuring Roche, HD Buzz, Professor Russel Snell (University of Auckland, NZ), and Paul Zuen (University college London, UK) Sunday, December 6 9am Start - Building your HD support team - Getting the most out of the NDIS - Making a difference to the community - Local research presented by Huntington’s Research Group Victoria There will be LIVE Q and A’s throughout where panellists will be able to answer your questions on all the topics we cover. Register here: https://us02web.zoom.us//6416019/WN_iF1OFV0SR7iHY-Ns4EdYkg

11.01.2022 Exciting news that we have received funding for a major research project that will help us better understand the needs of HD families and expand the services we provide. We want as many people as possible to be involved in the research so have a read of the news article and put down your name if you are keen to share your views and experiences. https://www.huntingtonsvic.org.au//grant-to-fund-research-

11.01.2022 Exciting news that the world’s first Huntington’s gene therapy trial is now underway. What is being tested is a one-off treatment designed to slow the progress of the disease for years, or even decades. https://www.huntingtonsvic.org.au//landmark-hd-gene-therap

10.01.2022 Are you 18 to 35 and affected by HD? An honours student from Monash University is looking into stress and HD in young people. To participate please fill out the survey via this link: https://monash.az1.qualtrics.com/jfe/form/SV_b3MRigPkWpkDZzf for further information including who you can contact please see the flyer attached

10.01.2022 A student from UNSW is looking into decision making regarding PGD. If you are interested in participating, you can find details on how to get involved below.

10.01.2022 Save the date! Our annual community day this year will be a two day virtual conference on December 5 and 6. Our events teams met last night and is working on the agenda which will be released soon for comment and feedback. Click on the link to read more about the conference. We hope to see you there. https://www.huntingtonsvic.org.au//community-conference-to

08.01.2022 If you have questions about Huntington's Disease this is a great video to watch. The HV staff answer all the big questions about the disease and its impact. Please share it with your friends.

08.01.2022 Powerful US television report on two families affected by Huntington's disease. Hollywood actor Scott Porter and his wife Kelsey Mayfield Porter are one of the couples involved.

07.01.2022 We see blue, we see you #LightItUp4HD . . . .... City of Melbourne, Melbourne Town Hall See more

07.01.2022 Researchers say breakthrough research showing how early changes in the brain of people HD can be detected will help determine the ideal time to begin treatment.

06.01.2022 The Ferguson’s share their Huntington’s story and remember two beloved family members lost to the disease.

06.01.2022 We see blue, we see you #lightitup4HD . . . .... Melbourne Star Observation Wheel See more

06.01.2022 We see blue, we see you #LightItUp4HD . . . .... Development Victoria, Flinders Street Station See more

04.01.2022 What’s it like being part of the most important Huntington’s clinical trial conducted so far? One Victorian participant tells us about the ups and downs of his journey so far and the hope he has that it will finally lead to a breakthrough treatment for all people with HD.

04.01.2022 Sign up here for our Community Conference on the 5th & 6th December! https://www.huntingtonsvic.org.au/even/community-conference

03.01.2022 UPDATE: The Phase 4 HD Roche trial has been altered early. Please read the details below. We will keep you up to date as we know more. If you need to seek support, please contact us on (03) 9818 6333 or via [email protected] https://en.hdbuzz.net/300

03.01.2022 Sign up for the HV Community Conference 5th & 6th December 2020 here! https://www.huntingtonsvic.org.au/even/community-conference

01.01.2022 They are off! The Hunters set out today for the Murray to Moyne bike ride raising awareness and funds for HD along the way. You can donate here: https://www.mycause.com.au/even/thehuntersmurraytomoyne2021 Good luck team!

01.01.2022 Huntington’s Victoria are having their annual community conference online this year! It is FREE, and will be held on Saturday 5th starting at 2pm AEST and Sunday 6th December starting at 9am AEST. Learn about current research, and topics such as building your HD support team, living well with the impacts of HD, getting tested, NDIS and much more, from a mix of professionals, researchers and community members. For more information and to register, please go to our website: https://www.huntingtonsvic.org.au/even/community-conference