Our Programs & Services

WHAT WE DO

We are the only organisation in Queensland established for the support and advocacy of Queenslanders impacted by Huntington’s disease, and the health professionals, service providers, and community supporting them. Our team provides a range of services throughout the state, while advocating for our clients on a social, medical and political level. We are proud to be a reputable source of up-to-date information, sharing this information through our staff, our website, our social media page, our newsletters, and through our wonderful information library.

Facilitating support groups, managing family respite programs, providing advice, support, information and advocacy are just some of our important services. All of our team work their hardest to make sure our community is benefited, and we take our responsibility very seriously.

Raising awareness and pursuing fundraising opportunities are some other activities we do, and we encourage our community to also get involved. Contact our fundraising coordinator for information about how you can help our community.

CLIENT SERVICES STAFF

Our client services staff, Lauren and Tressa, are available Monday to Friday to assist and support individuals, families and health professionals. They are bound by our privacy policy and federal legislation to ensure each individual’s information is protected in the provision of services. Our staff work with individuals, families and health professionals by providing information, support, advocacy and referrals.

Staff are available in-person, on the phone and via email. With regularly scheduled regional trips, our staff make every effort to visit everyone across the state who would like to meet them. They can also provide information sessions to service providers. Please contact Lauren or Tressa to enquire about a local visit or information session.

OUR SERVICES INCLUDE:

o Providing individual, family and carer support in person, over the phone and via email
o Facilitating family support group meetings
o Organising respite holidays and family activities
o Providing information to families and health professionals and maintaining an up-to-date information library
o Educating and assisting service providers
o Advocating to the wider public
o Referring individuals and families to professionals who can better assist them with different requirements
o Raising awareness in the wider community of HD and its impacts
o Regular newsletters to clients, carers and members
o Fundraising activities and opportunities

Family Support Groups are established throughout Queensland, and can be a valuable opportunity to engage and interact with others in similar situations in a relaxed, supportive environment. Support groups have proven benefits in managing a condition, and can be an invaluable source of support, advice and information. Whenever possible, Family Support Groups are run with our client services staff, but these groups can be organised and facilitated by family members to ensure they can occur on a regular basis.

These support group meetings cover a range of topics about HD, from discussions about research and treatment to daily life with HD. They are a supportive, informal opportunity to seek information and support in a safe and friendly environment. For information about meeting times and places, or to find out about facilitating or organising a support group in your area, please contact us on (07) 3435 4300.

Staff and volunteers facilitate short Respite Holidays for HD affected persons, offering a welcome change of routine and activity and also providing their carers with respite. Usually held annually, a respite holiday is an extremely positive experience for both helpers and clients. Contact us if you would like more information, or view some of our newsletter archives to see what we’ve done in previous years.

The Newsletter is circulated regularly to more than 550 families, health professionals and care facilities in Queensland. These newsletters contain information on recent client services activities, updates on research, handy suggestions for daily living, ideas for fundraising and a special thank you section for all of our wonderful donors. You can access old archives here, or ask to receive newsletters by contacting us or sign up here:

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Support within the Huntington’s community is indescribably important. Having varied and constant support opportunities provides families with routine, help, and friendship. We facilitate and organise Family Support Group meetings across the state of Queensland, enabling our widespread community to establish local links and support networks. Our client services officers are available Monday to Friday to answer calls, respond by email, or meet in person where possible, to provide support, advice and assistance as best they can.

Timely and accurate information is one of the most important ways of understanding how best to manage Huntington’s disease. We are a proud local source of information and resources about all things Huntington’s-related. If you would like information on anything ranging from genetic risk to dietary requirements, we can help. We also collate information and research updates from across the world, providing updates to our community through newsletters, social media, and good old-fashioned face-to-face chats.

Our comprehensive information library contains books and videos for anyone interested in learning more about HD, and we have a helpful range directed for children and young people to help them cope with the disease. If you would like to have a look through our library, or borrow something, please give us a call.

Our organisation, through the activities of our staff and our Board, works hard to advocate for our community in personal situations, through public awareness, and for adequate government policy. Through our advocacy, we hope to improve the lives of everyday Queenslanders impacted by Huntington’s disease, ensuring access to appropriate care and support, and by reducing misunderstanding and misinformation in the wider community.

One of the services we can provide is referrals to relevant medical and social services in your local area. It can be very important to have referrals available if you are having difficulty seeking the specialist attention you require. If you would like to find out more, or need a referral, please contact us.

Being a carer can be both rewarding and challenging, and it is vital to have a support system in place to help you manage your situation well. Our team is always there to provide support, advice and just to listen. We can also direct you to other support networks that can offer additional help. Give us a call, or look through the list below, to see if they may be of use to you.

Many carers also find the Family Support Groups to be very beneficial for them and their family in sourcing support, brief respite, and local contacts. Please contact us to find out about a local support group near you.

Carers Queensland – 1800 242 636

Young Carers – 1800 242 636

The HD Clinic is available on a monthly basis to anyone who can attend. Held in the neurology department at the Royal Brisbane and Women’s Hospital (RBWH) on the first Friday of every month, patients can access a range of specialist health professionals. Bookings are vital, as the clinic is very busy, and attendees are strongly encouraged to bring some activities and food, as the clinic is run throughout the day, and appointment times can vary. To book, please contact Lily at the clinic on (07) 3646 7103.

With the rollout of the NDIS in Queensland in 2016, Huntingtons Queensland will continue to assist our community in finding the best possible care and services available to them. Many changes are expected under the NDIS, and we appreciate that it may be a worrisome time for some, as we all adapt to these changes. For any assistance or questions in the leadup to this rollout, you can give us a call, or visit the NDIS website for information about Queensland.