1800 244 735

Helpline (02) 9874 9777

The Year That Was….

As we approach the end of the year and the Christmas holidays we are all a little unsure whether we will be getting together with family members and loved ones to share the festive season in the way we always do. One thing we can be sure of is that we will look back on 2020 as the year that was!

Reflecting on this year, it all feels a bit unreal: bush fires, COVID-19 and the entire country in compulsory lock down! We then had to find ways to keep the virtual doors open to ensure our families were not left without support.

The year that was… changes

COVID-19 impacted the majority of NDIS Support Coordination clients. We found that we had to spend significantly more time than usual to get the best results for them. Even arranging meetings required more creativity and flexibility.

We have had some great wins along the way – finding safe supported housing for nine people with Huntington’s disease. This bodes well for the larger numbers of people with HD who will want to move from aged care into disability residential care in the coming year.

A big change in the way we support children and young people came about during the lock-down period when we extended our services to include parent counselling via video and telephone. This was successful and resulted in families staying connected with our Youth Connection Program during this time.

Offering professional support to parents and carers as a way of meeting the needs of children and young clients was based on our understanding that well-supported parents and carers have greater capacity to meet the emotional needs of their children.

Yes, all in all it’s been a mixed-up year but it was heartening to see that people are resilient and continued to sign up for our seventh Walk 4 Hope, doing it their way and in their time.  Wearing their green t-shirts and getting noticed to raise both awareness and funds for Huntington’s.

Help us by sending a special gift of $50 or even $75 this Christmas. It’s not the size of the gift that’s important but the thought behind it and we are grateful for your generosity.

On behalf of all of us all here at Huntington’s NSW ACT Thank You for your dedication and for everything you do to support families affected by Huntington’s disease.  We wish you and your loved ones a wonderful Christmas, and it goes without saying, a happy and healthy 2021.

Donate Here

Share on facebook
Share on twitter
Share on pinterest
Share on email

Latest News and Stories

PGT will be available for Huntington’s families

Published date: 18 May, 2021

Huntington’s families now have several options when considering when and how to have children. One of these options is PGD – Pre-implantation Genetic Diagnosis, sometimes known as PGT. This allows people to use IVF technology to ensure that only embryos without the HD-causing mutation are implanted, meaning that these children will grow up HD-free.

A 4000km cycle to Broome

Published date: 19 April, 2021

Erica and Bill are about to set off on a cycle to Broome. Erica will be the support driver for her partner Bill as they cover over 4000km to reach Broome in June. We are so grateful that you have chosen to fundraise for us.

OUR SUBMISSION to the Joint Standing Committee on the NDIS inquiry into Independent Assessments

Published date: 6 April, 2021

Huntington’s Associations in NSW/ACT, QLD, WA, SA/NT and TAS have partnered with other groups representing people with various neurological diseases to make a joint submission to the Joint Standing Committee on the National Disability Insurance Scheme inquiry into independent assessments under the NDIS. In summary, we do not support the introduction of independent assessments in ... Read more

WAVE PRECISION-HD clinical trials stopped

Published date: 6 April, 2021

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 ... Read more

An Open Letter to the Australian Huntington’s Community

Published date: 25 March, 2021

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.

Generation HD1 trial halted

Published date: 23 March, 2021

The Roche clinical trial called Phase III Generation HD1 has been halted, not by Roche, but by an independent data monitoring committee.