Huntington's NSW & ACT in West Ryde | Non-profit organisation

Huntington's NSW & ACT

Locality: West Ryde

Phone: +61 2 9874 9777

Address: 21 Chatham Road 2114 West Ryde, NSW, Australia

Website: http://www.huntingtonsnswact.org.au/

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• Non-profit organisation
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25.01.2022 Great article in today's Western Advocate https://www.westernadvocate.com.au//vivabilitys-walk-4-ho/

24.01.2022 Leaders of the pack Glen Allardyce and Lewis Kaplan in the park today

24.01.2022 Vaccination for COVID-19 People with HD in residential aged care or residential disability care should be able to receive their vaccinations in Phase 1a. Everyone else with HD should fall under ‘the 70 or over’, or the ‘younger adults with an underlying medical condition’ categories in Phase 1b.... We understand that people with a disability, but cared for at home with disability care staff, will also fall into Phase 1b. Family carers will fall into whatever category their age or other medical / disability conditions dictates.

23.01.2022 Team Haddy will be walking on Sunday from Bulli Beach to Sandon Point doing the Walk 4 Hope their way. Usually they have a family reunion at the Parramatta Walk. Great work Team Haddy, Robyn Russell, Dianne Crook, Marg Crook

23.01.2022 INTERVIEW WITH PROF ELIZABETH McCUSKER Prof Elizabeth McCusker kindly agreed to be interviewed as special guest speaker at our 2020 annual general meeting to recognise her retirement after many years as both a clinical and research leader. For those who missed this interview, generously conducted by Josh Szeps, it is now available on YouTube ... https://youtu.be/z1n2FRLBVjU. See more

23.01.2022 Jane Tiller is the Ethical, Legal and Social Advisor on Public Health Genomics at Monash University. She talks about the national research project to evaluate the impact and effectiveness of the life insurance moratorium on the use of genetic test results for underwriting purposes. With MJA news and online editor, Cate Swannell.

22.01.2022 The Hunt4Hope shop in Maroubra has some fabulous brand new men’s suits and very inexpensive. Great formal suits for those young people going to a year 12 Formal. Anzac Parade Maroubra. Hunt4Hope#

22.01.2022 We have learned today that the Roche clinical trial called Phase III Generation HD1 has been halted, not by Roche, but by an independent data monitoring committee. The detailed reasons for this decision are not yet available, but those participating on the trial of the drug (known as Tominersen) are being contacted individually by the research teams to let them know this tough news. We, like you, are extremely disappointed by this decision as so many hopes were riding on a s...uccessful trial outcome for a new and effective drug. We know that Roche and its Australian research partners will be communicating more details as soon as they are available. Please remember however, that there are more trials underway, and more still in the pipeline. HD research funding is high relative to the number of people with HD, as it is seen as a potential gateway to better understanding other neurological diseases. While this doesn’t make today’s news any easier, please remember that both hope and work for a cure, or a way to prevent HD is a huge priority for a large body of researchers across many different countries and many research disciplines. Here is the statement put out by the Roche team.

21.01.2022 The Parramatta Walk 4 Hope will NOT take place tomorrow. You can still wear your pink and green and walk anyway, anywhere in September. Keep the walk alive and your fundraising there is still 11 days to go this month.

21.01.2022 A young lady with a big heart! Kimberley is going to cut her hair off for Huntington's. Thank you so much for the fundraising and good luck reaching your target. #motivationalmonday #HuntingtonsDisease

20.01.2022 DEUTETRABENAZINE is a new drug for chorea marketed by Teva Pharma. It is being considered for listing on the PBS. If you want to make a submission about this drug, deadline is 10 February 2021. You can fill in a form here: https://www1.health.gov.au//Co/PBAC_online_submission_form... We will be making a submission in favour of listing.

20.01.2022 More disappointing news this week, Wave Life Sciences discontinued their treatment aspects of their trials. 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. Here is the letter to the Australian Huntington's Community.

18.01.2022 Great support for Walk 4 Hope from Vivability and Bridges Financial Services in Bathurst

17.01.2022 We don't put out media releases very often (yet), but here's one aiming for a win for families with Huntington's disease in the ACT Media Statement to ACT candidates in October 2020 Territory election 24/9/20... For immediate release Huntington’s disease commitment for ACT Huntington’s NSW ACT is pleased to learn that the Canberra Liberals have made a commitment in their election manifesto to fund a Huntington’s specialist social worker to support people with Huntington’s and their families on their long and challenging journey with the disease. In 2019 we proposed to ACT Health that it fund a specialist Huntington’s social worker. We call on the ALP and other political parties and independents to match this commitment to support those living with one of the world’s worst diseases. There are around 40 families affected by Huntington’s disease in the ACT. Very few health professionals, or disability and aged care workers know much about the disease or how to support or care for those affected. Huntington’s NSW ACT supports families affected by Huntington’s disease across NSW and ACT. Huntington’s disease is a cruel, relentlessly progressive inherited neurological disease which affects movement, emotions and cognition. It usually manifests between the ages of 30-50 years and can last up to 20 years or more before death. There is no cure but instead a guarantee of long-term disability and suffering for people affected and for their families. For media comment: Lewis Kaplan CEO M: 0407 108 667 ends

16.01.2022 Team Kellaway-Wilson are doing really well with their fundraising. Thanks so much for your wonderful commitment to raising awareness and funds Thea and Matt.

14.01.2022 WALK 4 HOPE 2020 FREE REGISTRATION THIS YEAR Donations over $2 are Tax Deductible 4 Locations... Orange 6 September Speers Point 12 September Canberra 13 September Parramatta 20 September Click on Start Fundraising to Register

12.01.2022 The Settlers Tavern Social golf club fundraising day for Huntingtons Disease. Wow! I continue to be gobsmacked [but not surprised] by the generosity of the members of the Settlers Social golf club year in and year out. I can assure one and all that the HD community are most grateful and forever thankful. A fantastic result given the restrictions imposed by COVID. In just one afternoon at the tavern the club raised $2,200+. As our Captain and Geeza said, most members have a hand in it but there are a couple who deserve a special pat on the back. We all know who they are.........Thanks Juls, Alison and Dave. Also big thanks to our Preso, Nev, and to Adrian and Tim and their staff at Settlers, and to Closey and Stevo for their contributions. It was a great day, with great food and great mates. Special thanks to Mark Faulkner

12.01.2022 It is with great pleasure that we invite you to Huntington's Australian National Conference - 25 May to 1 June. This will be an online event to accommodate for the changing COVID space. Please check out our website for more information and share this amongst all of your networks. https://huntingtonsnswact.org.au/national-conference-2021/

12.01.2022 Walk 4 Hope at Parramatta Park this Sunday will not proceed due to COVID restrictions. Please do the walk your way, anywhere, anytime in September. There is no reason why you can’t walk In your own small groups at Parramatta Park. Be seen wear pink and green in September

12.01.2022 Team Westmead are up and running and once again supporting Huntington's NSWACT Walk 4 Hope. Team Westmead do make a difference to our lives, if you can give a donation it would make their day.

11.01.2022 NOTICE OF ANNUAL GENERAL MEETING The Annual General Meeting of Huntington’s NSW & ACT Inc. will be held virtually on Saturday 21st November 2020 ... at 12 noon by VIDEO CONFERENCE Here's the link to the meeting details https://huntingtonsnswact.org.au//notice-of-2020-annual-g/

11.01.2022 Rachael Brooking really does support Huntington's even going the fully monty! Love your fundraising ideas Rachael.

11.01.2022 Huntington’s NSW ACT wins grant from not-for-profit organisation The Co-Group to fund a part-time social worker position for Canberra and surrounding areas of NSW for the next three years. We are most grateful to The Co-Group, a workforce solutions business which channels its surplus into benevolent causes. The funding will support a part-time Huntington’s disease (HD) specialist social worker for the ACT and surrounding areas of NSW for at least the next three years (and h...opefully longer). This project has been discussed with HD families and other local stakeholders since 2019. Huntington’s NSW ACT is very pleased we are able to bring it to fruition. We plan to form partnerships with ACT Health, the Huntington Outreach Service at Westmead Hospital, and relevant local NGOs in the Canberra area. The only other regional HD social worker in NSW is John Conaghan, based in Newcastle, with whom we worked closely to develop this new position.

11.01.2022 Would you like to shape research on housing and support for people with Huntington’s disease? Researchers at La Trobe University and the Summer Foundation are looking for people to help shape a research project. This research project is in partnership with Huntington’s NSW ACT. The research project is trying to understand the best housing and support options for people with Huntington's disease. We would like people with Huntington’s disease or people who are carers to help... design and shape this project. We are looking for five to seven people to be part of this group. If you choose to be involved, you will be asked to attend three virtual meetings from February - June 2021. Each meeting will be 90 minutes and you will be given a $60 Coles/Myer voucher for each meeting to thank you for your contribution. If you would like more information about the study and the community group, please contact Emily Gosden-Kaye or Elise Davis, on the details below. - [email protected] - [email protected] or 0436 345 578.

10.01.2022 Community Survey - Help us to help you. We would value your input please. https://huntingtonsnswact.org.au/news/community-survey-2020/ Every survey received by 31 December will go into a draw for a few days in Wollumbi in the Hunter Valley - don't miss out who couldn't do with a little break. Survey closes on 31 December

10.01.2022 A reminder that tomorrow is our AGM. It’s easy this year all online. Dr Liz McCusker is the guest speaker.

10.01.2022 Christine is less than $20 off her target. Who can make her day and tip it over

10.01.2022 It was lovely to meet these first time Walk 4 Hope attendees in Canberra Gabrielle and Ken. Hope to see you again next year.

09.01.2022 Thanks to Team Vivability in Bathurst for wonderful support for the Walk 4 Hope in the whole of September. With Rachael Brooking and Blake Aubin. Look out for the story in the Central West tomorrow.

09.01.2022 Marg Crook is just $200 off her target. She will be walking at Warners Bay no doubt wearing her T-Shirt. Give her a shout out if you see her and please help her to get to her target of $1500

09.01.2022 Team Glen Allardyce first to finish the Walk at Weston Park

09.01.2022 Having fun on the Walk 4 Hope

08.01.2022 Don’t forget about the AGM on 21 November will be a virtual event so you don’t have to leave your lounge room.

07.01.2022 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 for the Australian Huntington’s disease community. Read more here

06.01.2022 There will a support group meeting for Orange Central West this Saturday 21st at 11.00am, this will include the zoom cross of the Huntingtons NSW ACT AGM at 12.00. Live Better Cafe Connect at 107 Prince St. Orange Message us to let us know you are coming.

06.01.2022 Did you know this Sunday is Rare Disease Day? HDYO are looking for HD Heroes to assemble for a photo collage. Send in your selfies with bright coloured clothes or paint. #raredisease #rarediseases #hd #huntingtonsdisease #huntingtons #letstalkhd #RareDiseaseDay2021

06.01.2022 Many thanks to the Settlers Golf Club in Gosford for a great day for Huntington’s NSWACT with Amanda Dickey and Dianne Faulkner

06.01.2022 Congratulations to our community survey winner Stephanie! Enjoy your family getaway at the beautiful Cedar Creek property.

06.01.2022 Walk 4 Hope all over for another year. Thank you to everyone who committed their time and effort to do the walks their way in September. Fundraising pages will remain open until the end of October. $44,320 raised on line will considerably help to support families impacted by HD. Thank you. ... https://walk4hope.blackbaud-sites.com/

05.01.2022 CASUAL POSITION AVAILABLE at the Hunt 4 Hope Op Shop in Maroubra! Seeking a vibrant, enthusiastic and creative member to join our small team for 1-2 days a week starting the week of Nov 30. We are a funky self funded op shop who raises money to support families and those affected by Huntington's Disease. Experience in retail or hospitality and a creative flare is preferable. If this position appeals to you, please email your resume to [email protected] Look forward to hearing from you soon :)

04.01.2022 Rachael Brooking has been busy with raising awareness and funds this month. She has delighted us with her amazing outfits, including those crazy green shoes! Plus she has walked over 164KMs! Great work Rach and thanks for your wonderful support. She still has 9 days to go, see if you can chip in to help her.

04.01.2022 We are almost at the end of September in fact just 3 sleeps. Thanks to all those people who have been flying the flag for Huntington's and raising the awesome amount of $43,168! There is still time to make a donation in support of all those people involved. Check them out. https://walk4hope.blackbaud-sites.com/

03.01.2022 Thanks to Good 360 for providing some goodie bags much appreciated by some people in Bingara with Veronica Ali

03.01.2022 Wow what a great weekend. People walking for Huntington’s their way, anywhere. We are half way through the month and we still need to reach our goal to raise $50,000. Please keep up flying the flag for Huntington’s NSWACT and raising funds. Every dollar counts

03.01.2022 Great photos from Team Beeston from their Walk 4 Hope their way on 13 September.