HD Spotlight on Rachael Brooking

Convenor HD Awareness Orange and Orange HD Support Group

Community profile – Orange is leading awareness raising

Q.) What do you like about Orange?

A.) I have lived here all my life, not having the opportunity to go away to study whilst Mum wasn’t well, and I was her main carer. Orange has  a  strong  sense  of community and a vibrant spirit. As much as Orange is moving forward as a city, a large country town at heart still lies within.

Q.) Tell us why you set up the Orange HD Support group.

A.) As I  decided to set up the Orange support group  as  a  way of connecting rural families. unless you have experienced Huntington’s Disease, it is extremely hard to explain exactly what it is like and how it affects, well ….. your whole existence. I want our hd families to know that there is support for them, whether they come to the meetings monthly or less for those who travel far, but a sense of belonging & love lies within these families who are going through something so devastating, and it is just so lovely for them to sit with those who know exactly what you are going through, or have been through,or are about to go through.

Q.) What barriers do you think families face in your region?

A.) There are many barriers. Most important is a lack of awareness. unfortunately, HD does not have a celebrity ambassador, and so it is us little people getting the word out about the grave effects hd has on us and our families. I quite often feel the roles change when I step into the Doctors, nDIS, OT, Care facilities and the like, where you are often the one educating these specialists rather than getting the help needed, so there’s a lot of frustration within these families about this. another barrier is not having a social worker who understands the many facets of HD, from little things like the lack of motivation to more complex issues around psychological changes. I would love a social worker with HD experience to do an in-service with social workers in our areas, even by video-conference.

Q.) How does  Orange  raise awareness for  HD? and why is this important?

A.) through hd awareness Orange Inc., our  little association is committed to providing awareness & education in Orange & the Central west area. I am quite amazed whilst selling raffle tickets that we can have 6 people in an afternoon telling me they knew someone, or cared for someone with hd. I am getting the picture that Huntington’s  Disease is more well-known than I thought. However   what  Huntington’s actually IS, not so much. I am working with Huntington’s NSW ACT to provide information packs which HA Awareness Orange will gradually distribute to every medical practice in the region. I want to deliver these in person along with an in-service if they will have me! I then plan to rejig the packs a little to provide to carers & Care facilities and to legal professionals.

We also have several events each year, from the High Tea 4 HD to our redhead hunt4hd  ginger pride Festival. I also tell my story  to community  groups  such  as Rotary & Inner Wheel. It is important that our HD stories are heard. We have the right to as much support as people with other diseases, and the more we talk about HD, make noise, share pictures, join events etc., our  words  and  noise  will start to make a difference, and I believe it already has.

Q.) Why do you choose to be a member of Huntington’s NSW ACT?

A.) I choose to be a member so that I can keep up to date with what is going on around NSW & ACT, and the fabulous things that are happening all over the world. I also feel that it is important to be a member, so the association gets feedback on how we families are feeling and what is needed in our areas. the association is there for the families, we too need to be there for the association.

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

Latest News and Stories

Our submission to the Disability Royal Commission

Published date: 29 July, 2020

Five Huntington’s state associations have collaborated on a submission to the Disability Royal Commission. You can download and read the submission HERE.

HD News Winter 2020 published

Published date: 16 July, 2020

Please download your copy of HD News Winter 2020 HERE Renew your membership before 31 July to be in the ballot for a free weekend in a donated holiday house near Wollombi! Smart new website launched Dancing at the Vatican documentary  free tickets Free holiday house stays ballot with membership renewals Hunt 4 Hope Op ... Read more HD News Winter 2020 published

We’re hiring – Marketing & Fundraising Coordinator (re-advertised)

Published date: 8 July, 2020

Huntington’s NSW ACT is recruiting a part-time marketing & fundraising professional due to the forthcoming resignation of the person currently in this role. Position start date: late August. Long hand-over, with incumbent leaving at the end of October. Huntington’s NSW ACT is a small but vibrant charity, serving people living with Huntington’s disease and their ... Read more We’re hiring – Marketing & Fundraising Coordinator (re-advertised)

Neurological Alliance Australia – Statement on Expanded Telehealth

Published date: 25 June, 2020

The Neurological Alliance Australia has today issued a Joint Position Statement calling on the Australian Government to permanently extend the amendments made to MBS telehealth items introduced in response to the COVID-19 pandemic. These supports are currently scheduled to cease after 30 September 2020.  The members of the NAA, representing adults and children living with ... Read more Neurological Alliance Australia – Statement on Expanded Telehealth

UPDATE from ROCHE clinical research program into HD drugs

Published date: 21 April, 2020

ROCHE / GENENTECH have released a statement: Update on tominersen (RG6042)* Huntington’s disease (HD) clinical programme: Recruitment into GENERATION HD1 clinical trial has been completed You can read the statement in full here.

Exercise at home – for HD families

Published date: 15 April, 2020

We would like to share some information with you that you may find useful to help you stay as active as possible during this time. We believe that it is important for you to do some structured exercise every day to help you maintain strength and balance.

Welcome to our new website!

Please bear with us while we iron out the last minute wrinkles! If you have any feedback about our new site, please fill out the form below.