Huntingtons Queensland in Annerley, Queensland | Non-profit organisation

Huntingtons Queensland

Locality: Annerley, Queensland

Phone: +61 7 3064 3222

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• Non-profit organisation
• Charitable organisation
• Social service

24.01.2022 We were so excited to host our first in-person support groups in almost 10 months, but sadly, they won't be happening this week! To our clients in Mackay, Brisbane, Gladstone and Rockhampton regions, our apologies that we have had to cancel our scheduled meetings. We hope to catch up with you in person soon, once it is determined safe to do so. Until then, stay safe, stay home if you can, and if you'd like to chat, you can always give our team a call or attend our online supp...ort group meeting held next week. Thanks!

23.01.2022 A new study has indicated that language changes may be one of the first indicators of HD symptom onset, even while neuropsychological test results are still normal. You can read more about it here: https://www.eurekalert.org/pub_releases//upf--lda022020.php

22.01.2022 If youve got a bit more time on your hands at the moment, you might like to check out this interesting neurology podcast! This episode focusses on HD, and features an interview with Nancy Wexler, whose dedication to studying HD led to the 1993 discovery of the gene at the centre of the disease.

22.01.2022 Enjoy life while you can. Find what gives you some pleasure and go for it. Dont get kidnapped by this. You may have heard of Dr Nancy Wexler, the researcher who was instrumental in the journey to discovering the huntingtin protein. But how much do you know about her as a person, or her experiences in Venezuela? While we all have a bit more time at home, we thought wed share this great long read with you!

22.01.2022 Are you keen to have a chat? Needing some friendly faces to brighten up your isolation? Were delighted to announce we will be holding another online catch-up session via Zoom on Thursday 11 June at 2pm! You can register for this digital catch-up by filling out the form below. We hope you can make it!

22.01.2022 Last Friday, we sent out an important email about an exciting upcoming event on our calendar! We are delighted to bring you the opportunity to participate in the Australian premiere of *Dancing at the Vatican*! This moving documentary follows the journey of dozens of people impacted by Huntingtons disease, most from small, isolated villages in South America, as they travel around the world for a special meeting with Pope Francis at the Vatican. ... The screening will be followed by a special Q&A session with renowned war correspondent and HD advocate Charles Sabine. Best of all - you can participate all from the comfort of your own home! The screening and Q&A are all happening online. The premiere will screen at 7pm on Friday 12 June, and registrations are $20. All profits will go to HD services including Huntingtons Queensland. Register today for this special event! https://www.eventbrite.com.au/e/dancing-at-the-vatican-aust

22.01.2022 We know there have been a lot of questions in the last fortnight regarding clinical trials. A few days after Roche's trial announcement, the European Huntington Association hosted a webinar to try and offer a bit more insight into the tominersen drug trial. The webinar was recorded and edited, and is about 38 minutes long. If you have the time, it's well worth the listen! https://www.youtube.com/watch?v=gOm0sJtPoKA

22.01.2022 Its time again to register for our weekly online catch-up! Wed love to hear how you are going and answer any questions you have, or simply lend an ear. Were also looking at inviting some guest speakers on topics youd like to learn more about. If you have any suggestions or ideas on topics or speakers, please let us know by commenting here or email us at [email protected]! Register here:... https://app.etapestry.com/o/HuntingtonsQueensland/zoom.html See more

22.01.2022 Dont forget to register for our digital catch-up tomorrow! There is still time to register - fill out the form below, and then join us for a friendly catch-up from the comfort of your own home!

22.01.2022 Were really excited to host our next online catch-up this coming Thursday 16 July at 10am! If youd like to say hi, have a chat and catch up with our friendly team, please register your details via the link below. We hope you can make it!

21.01.2022 It's time again to register for our weekly online catch-up! We'd love to hear how you are going and answer any questions you have, or simply lend an ear. We're also looking at inviting some guest speakers on topics you'd like to learn more about. If you have any suggestions or ideas on topics or speakers, please let us know by commenting here or email us at [email protected]! Register here:... https://app.etapestry.com/o/HuntingtonsQueensland/zoom.html See more

20.01.2022 Are you under the age of 25 and caring for a family member or friend? Wellways would love to hear from you! They are developing a program specifically for young carers, and need your experience and knowledge to help build the perfect young carers program. For more information, you can read the attached flyer, or contact Claire or Fiona at Wellways, using the information below.

20.01.2022 We are quickly approaching the end of the financial year, and we know that it has been a financially challenging few months for many. We would like to thank everyone who has made a donation to Huntingtons Queensland in the past month or so. We know and appreciate that for many, the current circumstances have made donating much more difficult, if not impossible. We are so grateful for those who have been able to support our work, and we are also grateful for those who have co...ntinued to support Huntingtons Queensland in other ways - by following our work, but sending a friendly message to our staff, and by being patient as we navigate this changed way of operating. For those who have been considering making a donation, you can donate easily online via the link shared below. All donations of $2 or more are tax deductible - so now is a great time to make a donation! Thank you again - we are so grateful for your support! https://app.etapestry.com//HuntingtonsQueensla/donate.html

19.01.2022 Its a public holiday in Brisbane today for the not-Ekka! Our team will be back to work Monday morning. Enjoy your weekend!

19.01.2022 Its time again to register for this weeks online zoom support group catch-up, held Thursday morning. If youd like to catch up with our friendly team, please register using the link below. Remember - all are welcome to join in. Wed love to catch up with you!

19.01.2022 Whos coming to Glasgow? Thanks to the generosity of our donors and supporters, Huntingtons Queensland is able to offer a strictly limited number of scholarships to attend the first ever International Young Adults Congress in Glasgow Scotland, this coming May. For applications and further information please email [email protected].

18.01.2022 Being in isolation doesnt mean you have to just sit around. Exercise is absolutely vital for mental and physical health, and is more important now than ever! The awesome team at Huntingtons WA have put together their fantastic free app - ImpactHD - which features health and wellbeing activities specifically designed for people impacted by HD, based on local and global research. Its free to download and use, and we couldnt be more delighted to recommend it! Have a look her...e: https://www.impacthd.org.au/1

18.01.2022 Not everyone realises that we all carry the huntingtin protein in our body. For most of us, the protein is a normal, healthy length. But for those with HD, the huntingtin protein is longer than it should be. There is still a lot that we dont know about the role that the healthy huntingtin protein plays in our bodies. Scientists have spent many years trying to determine what it actually does, and although they havent found an answer to this question, they know that its essential to live. Today were sharing this interesting article from HDBuzz, which explains how scientists have found one of the possible functions for the huntingtin protein - have a read!

16.01.2022 **An open letter to the Australian Huntington’s community following the 29 March 2021 press release from Wave Life Sciences** On March 29, 2021, Wave Life Sciences issued a press release regarding their PRECISION-HD clinical trials, which are ongoing in Australia and several other countries globally. The key information from the press release is that for both of these trials (PRECISION-HD1 and PRECISION-HD2), the treatments appear not to be working effectively. As a result of... these findings, Wave will discontinue the treatment aspect of these two trials. Study visits will continue to gather important final data, and then Wave will end any further development of these two treatments. Although this is most disappointing, these trials have provided essential knowledge that will help to guide next steps in developing treatments for HD. We as a community are grateful to the participants, their families and to the Australian site staff who have all worked so hard and given up so much of their time and effort to these two Wave trials. Australia has made key contributions to these trials, with sites in Perth, Brisbane, Sydney, and two in Melbourne. Wave has developed a third treatment which has some key advantages over the first two. The good news is that Australia will be one of the countries participating in this third trial. Australian sites have yet to be determined. For people with HD and their families, we share the disappointment in the news from both Wave and Roche. However, several additional treatments are in the works, and a broad array of life sciences companies are working to rapidly start more potential treatment trials. As more news comes to light about the Wave and Roche trials, we will organise an accessible way to communicate this important information to you, our community. From your Australian HD medical clinicians, State-based HD Associations and Huntington’s researchers

15.01.2022 **Attention young people impacted by HD!** Join our HD advisor Lauren, and Monica from Huntingtons WA, for a friendly zoom catch-up this coming Wednesday! Details are below - we hope you can join us!

15.01.2022 We have been loving our online support group catch-ups! It has been so exciting to catch up with people from all over Queensland, as they pop in to say hi and have a chat. We have had attendees from the Gold Coast, Toowoomba, Brisbane, Townsville, Bundaberg, and Cairns! This weeks support group catch up will be even more special, as we welcome a guest speaker - Fiona, from Wellways. Come along to hear what work Fiona and her team have been doing, and chat with our friendly ...team and other attendees. You can register now for this weeks catch up via the link here:

15.01.2022 Today, December 3, is International Day for People with Disabilities. This day is observed internationally and by the United Nations, with the aim of increasing public awareness, understanding and acceptance of people with disability and celebrate their achievements and contributions. Huntingtons Queensland is proud to observe and support this important international awareness day. This year's theme is Building Back Better: toward a disability-inclusive, accessible and sust...ainable post COVID-19 World and we think this is fantastic! Here's to a more accessible, inclusive and supportive post-Covid world! You can read more about this important day here: https://www.idpwd.com.au #IDPWD #IDPWD2020

15.01.2022 Do you have Huntington’s disease or care for someone with HD? Have you had difficulty getting suitable housing and support? Our friends at Summer Foundation are running a study looking at housing, services, and supports for people living with Huntington’s disease. They would like to understand people’s experience of good or inadequate housing.... Researchers from the Summer Foundation and La Trobe University are currently recruiting people for the study. If you would like more information, please contact Professor Jacinta Douglas by phone (03) 9479 1797 or email [email protected]. If you wish to participate, please contact 1300 626 560 or email [email protected]. The study will be a one-on-one interview with a researcher in our team, which will last for 60 minutes via telephone or by Zoom, and you will get a $60 gift card. https://www.summerfoundation.org.au

13.01.2022 Are you joining us for our online support group meeting tomorrow? Don't forget to register (just open the link below and fill out the details), and we look forward to catching up with you! Remember - all are welcome, and it's a great chance to have a friendly chat with others, all from the comfort of your own home. https://app.etapestry.com/o/HuntingtonsQueensland/zoom.html

13.01.2022 We are very excited to invite you all to a second online screening of the beautiful documentary "Dancing at the Vatican" on Friday 14 August from 7pm. This documentary captures the journey of dozens of people impacted by Huntingtons disease, as they travel from their hometowns for a special assembly with Pope Francis. The documentary will be followed by a special Q&A from renowned war reporter and HD advocate Charles Sabine, and a panel of key Australian-based scientists.... Registrations are $20 per viewing, and all funds raised will go to support Huntingtons disease charities including Huntingtons Queensland. We would love you to experience this fantastic, moving documentary - register now!

13.01.2022 Interesting news has been released about the Roche pharmaceutical trial to delay the progression of HD. Roche has now completed their enrolment for phase 3 of the trial, which they believe will be completed in 2022. They have 791 individuals enrolled across 100 countries. Phase 3 will test both long-term safety, and how the drugs effectiveness.... The drug is now called torminersen - you would previously have heard it called IONIS-HTTRx or RG6042. You can read more about it via the link below.

12.01.2022 We hope you can join us for another online catch-up session tomorrow morning via zoom! Catch up with our friendly team without having to leave your home. We hope you can make it!

12.01.2022 Wed love to catch up with you this Thursday morning at another of our online catch-ups! If you havent attended before, its very easy to join, and you can chat with our friendly team and other attendees, all while staying safe. To register, fill out the form on the link below. Wed love to hear from you!

12.01.2022 If you enjoyed the neurology podcast episode we shared last week, youll be happy to know that there is a part 2! This includes the 2nd part of the interview with Nancy Wexler. Make sure you have a listen, as Nancy speaks about what its like to live with HD.

11.01.2022 *An open letter to the Australian Huntington’s community* Dear friends, On 23 March 2021, the news began rolling out across the world that Roche would stop administering the treatments or placebos to patients in the GENERATION HD1 trial. More information will become available in the next weeks and months. The news from the study data analysis this week, however, suggests that in the current GENERATION HD1 trial, there is not enough benefit from the drug to support continued t...reatment. Roche is clear that the reason for stopping the drug does not relate to new concerns about the safety of the treatment. Importantly, Roche has not said they are stopping its HD program overall. The coming months may reveal Roche’s plans for HD following GENERATION HD1. Since the news from Roche came out, Australian clinicians, state organisation leaders, and Huntington’s researchers have been meeting on teleconferences to discuss what this means. We share your disappointment at the sudden news that the treatment aspect of the trial has been stopped. But we also remain optimistic about the future. *What does this news from Roche mean for the HD community?* The Roche trial will leave us all with many valuable learnings to apply in future trials. And many more very promising treatments are being explored in research studies. For example, here in Australia, we have two very important trials underway across five sites in four cities: Brisbane, Sydney, Perth and Melbourne. These trials are sponsored by Wave Life Sciences, a company based in Boston, USA. Wave is getting ready to start a third trial, which will also roll out in Australia. Outside of Australia, at least 10 more HD trials are underway or getting started, all with significant financial investment. We have a lot more treatments to try, and research will continue until treatments are found. We are very grateful to those people who have volunteered for our HD clinical trials so far, and to the many of you who have participated in research. Australia is a key research hub, recognised internationally for our work in HD. We need the Australian HD community to continue giving their time and energy, so that together we can move closer to treatments that make a real difference for families with HD. Everyone can help. This includes people with HD, their family members, clinicians and support workers of all kinds, and our state organisations. Across Australia, we are committed to making things better for families with HD, with better treatments, care, and support. Despite the very disappointing news this week, we remain full of energy, and we will continue to work as a united Australian community to do whatever is necessary so that every person who is affected by HD can live their best life.

11.01.2022 This Friday evening is the second and final online Australian screening of the HD documentary Dancing at the Vatican. If you missed this beautiful films Australian premiere, this is your chance to experience the journey of families around the world as they came together at a special audience with the Pope. Registration is $20, with all funds raised going to HD not-for-profit organisations, including us!... The film will screen online this Friday evening from 7pm, and will be followed by a special Q&A panel, featuring special guest, renowned former war reporter, and HD advocate Charles Sabine. Register today to make sure you dont miss this special event!

10.01.2022 Times are a little different, but our team is definitely put to the challenge of adapting to keep our services available! Our awesome HD Advisor Lauren was able to deliver a full education session online for the Opportunoty team in Townsville, and we can do the same for you! If you or your team are needing an education session, we can still deliver this to you digitally - just send us an email or call our office to find out more!

10.01.2022 "It absolutely sucks that Huntingtons disease will manifest one day but there isnt anything I can do to change that. What I can do is continue appreciating the good things my diagnosis has brought me..." We love this first-person article about changing the way we view a life-changing diagnosis. It can take time and effort, but we love the idea of finding beauty in everyday things. Have a read...

09.01.2022 We hope you can join us this Thursday for another online catch-up session! Register through the web page below - we look forward to having a chat!

09.01.2022 This Friday evening is the second and final online Australian screening of the HD documentary 'Dancing at the Vatican'. If you missed this beautiful film's Australian premiere, this is your chance to experience the journey of families around the world as they came together at a special audience with the Pope. Registration is $20, with all funds raised going to HD not-for-profit organisations, including us!... The film will screen online this Friday evening from 7pm, and will be followed by a special Q&A panel, featuring special guest, renowned former war reporter, and HD advocate Charles Sabine. Register today to make sure you don't miss this special event!

09.01.2022 We're really excited to host our next online catch-up this coming Thursday 16 July at 10am! If you'd like to say hi, have a chat and catch up with our friendly team, please register your details via the link below. We hope you can make it!

08.01.2022 Are you joining us for the final online support group meeting for 2020? If so, make sure you've registered with the link below. We'd love to see you for one last catch-up, to spread some festive cheer and wish you all a happy new year. We will be back with more catch-ups in the new year, so keep an eye on your emails for the next invitation! We hope to see you online on Thursday!... https://app.etapestry.com/o/HuntingtonsQueensland/zoom.html

08.01.2022 **Attention unpaid carers** Tomorrow's online support group meeting topic has been changed slightly. Fiona from Wellways will be joining us to discuss the services available to unpaid carers under the Carer Gateway federal government reform.... Come along to find out more, ask questions, and have a friendly chat with Fiona and our team. Don't forget to register!

08.01.2022 It's almost time again for our Annual General Meeting (AGM), and we are very excited to invite you all to attend. To ensure social distancing and keeping everyone safe, we will be holding the AGM online using Zoom. We're excited about this new format, as it means that distance is no longer an obstacle in attending. We hope you will join us online next Thursday 26 November from 6pm. Please register via the link below to confirm your attendance.

07.01.2022 Are you seeking some social distance catch ups? Want to have a friendly chat with others? Were hosting our very first group catch-up for anyone whod like to come along - on Zoom! Well be online saying hi and having a chat next Wednesday afternoon. All you need to do is RSVP via the form below, and well send you more details. Wed love to hear how youre going, so dont be shy - come along!... RSVP here: https://app.etapestry.com/o/HuntingtonsQueensland/zoom.html

07.01.2022 In case youre wondering what our team has been up to, or what weve put in place to keep our community safe and connected, make sure you have a read of our latest newsletter! Stay safe out there!

07.01.2022 As you may have already heard, the upcoming HDYO (Huntingtons Disease Youth Organisation) conference has been postponed due to the current Covid-19 pandemic. It is now scheduled for 12 - 14 March 2021. Thank you so much to those who had applied for scholarships to help them attend this conference - your applications will still be considered for the conference, and announcements on successful applications will be made later this year. If you have any other questions about the conference, you are welcome to contact our team on 07 3435 4300.

07.01.2022 Would you or someone you know benefit from a shower trolley? Wayne, a community member, has kindly offered to give away a shower trolley, used only a handful of times. It is available for pickup from North Ipswich. It is the Aquarius Shower Trolley 1300ST, with the following details: - Aquarius polyethalene top... - Top frame p/coat steel, double zinc powdercoated base - 175mm casters - 180kg SWL - s/steel drop sides and end rails - heavy duty padded liner with pillow and drain hose - Australian made If you are interested, please contact Wayne directly on [email protected] or 0429 035 980. Thank you so much for your generous offer, Wayne!

06.01.2022 Our friends at HDYO (Huntingtons Disease Youth Organisation) have released an important survey, trying to understand how Covid-19 has impacted the wellbeing of young people in our community, and what services may need to be implemented to support them. We would love it if you could fill it out, and help gather as much information as possible! https://forms.office.com/Pages/ResponsePage.aspx

06.01.2022 We'd love to catch up with you this Thursday morning at another of our online catch-ups! If you haven't attended before, it's very easy to join, and you can chat with our friendly team and other attendees, all while staying safe. To register, fill out the form on the link below. We'd love to hear from you!

06.01.2022 It's a public holiday in Brisbane today for the not-Ekka! Our team will be back to work Monday morning. Enjoy your weekend!

05.01.2022 In light of the Covid-19 (coronavirus) situation currently impacting people throughout Queensland, and based on public advice from health professionals, we believe our priority is to ensure the health and safety of our community. As such, we have made the decision to cancel all scheduled Huntingtons Queensland support groups, community days and events for the foreseeable future. We understand that many of these events are a great help to many people, but we do not want to put... anyones health at risk. We are hopeful that things will be able to return to full operations soon, and we will continue to monitor the situation as it evolves. For now, our team are happy to provide email and phone support in lieu of support group meetings and events. Please get in touch on 07 3435 4300 if you have any concerns or would like information or support. Thank you for your understanding as we navigate this emerging situation.

04.01.2022 We are currently experiencing technical issues with our phones. If you need to contact us please email [email protected] or call 0459 029 538. Thank you.

02.01.2022 Many of us are facing new challenges as we are forced to stay home and away from one another more than ever. This family has come up with an idea to help their more vulnerable family member manage these changes. Its beautiful. What have you tried to make this new way of life more normal for you and your family? Wed love to hear your ideas!

02.01.2022 It's time again to register for this week's online zoom support group catch-up, held Thursday morning. If you'd like to catch up with our friendly team, please register using the link below. Remember - all are welcome to join in. We'd love to catch up with you!

01.01.2022 Its a confusing time, with lots of conflicting or changing information being shared, so were sticking with the experts. Heres the latest information from HDBuzz, and its pretty topical - what does Covid-19 mean for people impacted by HD? Have a read, and let us know what youve been doing to keep yourself and others safe. ... https://en.hdbuzz.net/284

01.01.2022 **Attention unpaid carers** Tomorrows online support group meeting topic has been changed slightly. Fiona from Wellways will be joining us to discuss the services available to unpaid carers under the Carer Gateway federal government reform.... Come along to find out more, ask questions, and have a friendly chat with Fiona and our team. Dont forget to register!

01.01.2022 Today is our team's final day in the office (or home office) for 2020. We would like to say a special thank you to every single person who has engaged with our team this year. We hope you all have a wonderful Christmas break - stay safe, be happy and get some rest! There is still time to donate to our important Christmas appeal - if you would like to support people impacted by Huntington's disease, please make a charitable donation this Christmas through the link below. All donations over $2 are tax deductible. Thank you - and merry Christmas!