Lisa Genova on ABC!

If you didn’t catch it yet:

Discussing Huntington’s disease with unique and insightful observation, Lisa Genova spoke recently to Richard Fidler on ABC’s Conversation Hour.

Following the success of her first novel, Still Alice, Lisa’s latest book  Inside The O’Briens tells the story of a family dealing with Huntington’s disease. Inside The O’Briens is available now for download, in bookstores and for loan from libraries.

Lisa’s storytelling and examples are vivid, leading Richard Fidler at one point to describe the cruel impact of the disease as ‘the devil itself.’

Listen to the full podcast here.

Kind regards,

Bernard Wilson
Executive Officer

Planning ahead for 2016

As we pushed through January (and didn’t the month just fly by!), we have found a lot of exciting things to look forward to. We dedicated the month to planning a fantastic year, and while some details are still waiting to be confirmed, the calendar is filling up very quickly.

Toya and Tress have plenty of metropolitan, regional and rural visits and support group meetings planned to keep them busy, and have received a number of requests for education from nursing facilities around Queensland. It’s great that they have the chance to be out amongst the community, helping everyone from families to carers to support services staff!

Keep an eye out for our latest newsletter, which should be coming out in the next few weeks. We’d really love to save some of the costs involved by sending it to as many people as possible by email rather than post, so if you have an email address and would be happy to receive your newsletters by email, please let us know!

I’m delighted to be planning a few things throughout the year to help raise funds to support the organisation. We will definitely be entering another team in the Bridge To Brisbane this year, so make sure you save the date for Sunday August 28th! We hope to fill the street with supporters.

If you’d like to prepare for the Bridge To Brisbane with another sporty event, I’d like to draw your attention to the Jetty To Jetty Fun Run on 17th July. We already have some entrants running for us, so get in touch with us if you’d like to be a part of it.

We are very proud to have some loyal and hard-working supporters out pounding the pavement to raise funds and awareness for our community! Kelly is preparing to run three half-marathons this year, and is currently in training. You can see her efforts and support her through her Everyday Hero page. Chantelle has just started her training, and is planning to walk the Larapinta Trail solo in May! You can read about her plans and show her some support at her Everyday Hero page. Thank you so much to Kelly & Chantelle for their dedication and hard work – their efforts are just one small insight into how amazing our community really is!

One final note: 2016 is a year of note for Huntingtons Queensland, as we acknowledge 40 years of service and support to the Huntington’s community throughout Queensland. We hope to celebrate this with smaller events throughout the year, but if you would like to be involved, or host your own celebration, we encourage you to do so! Whether it’s a sausage sizzle in the backyard, running a marathon, or simply chatting with your family and friends about Huntington’s disease to raise awareness, you will be helping our community.

If you have any questions, or want to know how you can help our community, feel free to send me an email (frc@huntingtonsqld.org.au) or give me a call in the office – I’d love to chat with you!

Have a great month,

Caitlin
Fundraising & Communications

A look at Client Services in 2016

Hello, and welcome to 2016! This year is sure to be filled with plenty of opportunities, not only for client services, but for the organisation as a whole, and it is very exciting to be a part of it.

My name is Toya and I am the new client services coordinator here at Huntingtons Queensland  (HQ). I am very excited about the year ahead in my new role and believe it is going to be a year of opportunities and growth. In the upcoming year I am planning on expanding the education packages, ensuring the Information Provision arm of our service is supporting the community services sector to meet the needs of the HQ community. If you are a service provider, please let me know if you would like to book in an education session at your facility.

 

Along with the other half of the Community Services team, I will be doing my upmost to attend as many regional Support Groups as we are able. I am truly grateful to have met so people already and look forward to meeting more people as the Client Services team travel around the state through-out the upcoming year. Keep an eye on our Calendar to see when we will be in your area and if you would like a visit from us please send Tressa or myself an email or phone us at the office.

 

The HQ community is inspiringly resilient and some people have shared with me their lives, challenges and hopes for the future. At HQ Client Services we are in a unique and privileged position to walk alongside people as they face life’s tribulations. As part of our Non-Clinical Counselling role, we are available to listen, support and refer people to services as needed.  We are available for phone, email or face to face catch-ups (where possible). Our 2016 client services calendar is filling up fast with Family Support Groups across the state, HYPE events and other promotional opportunities!

 

One of my first roles in this position, alongside our fundraising & marketing coordinator has been to reach out and ask the HD community about the HYPE program. At HQ we value feedback and are encouraging people to let us know what we do well and what we can do better. I would welcome any input going forward and believe together we can make HQ the best Huntingtons organisation in Australia (we can conquer the world in 2017!).

 

Kind regards

Toya

Farewell to 2015!

We don’t mean to startle you, but it’s already December!!

2015 has been a huge year for the Huntingtons Queensland community. We have welcomed new people, farewelled others, and have witnessed a number of changes, all with the goal of securing the future for the organisation and its community. We were pleased to receive confirmation of continued funding contributions from the state government until June 2019, and with our new Client Services Coordinator Tuija (pronounced Toya) on board, we are looking towards the new year with excitement.

The staff are all busily in planning mode for the coming year, but we thought it would be nice to look back on some of the great moments of 2015 as the year draws to a close:

  • Hotel Richlands thank you photoOur HYPe families celebrated one of best turnouts for a HYPe family lunch in April this year at Hotel Richlands. Families travelled from across south-east Queensland to be a part of it, and everyone enjoyed a fabulous family lunch together.
  • Cam Wilson and his amazing team hit the record books in February, achieving a Guinness World Record for Indoor Karting (greatest distance travelled by a team in 24 hours), and raising funds and awareness for Queenslanders with Huntington’s disease. An amazing effort, and worthy of the world record!
  • Throughout the year our client services team visited regions around Queensland to check in with our community, attend family support groups and offer support and information services in person. Areas visited include: Cairns, Townsville, Rockhampton, Gladstone, Mackay, the Sunshine Coast, Toowoomba, Ipswich and the Gold Coast.
  • Some cheeky Bridge To Brisbane participantsA passionate, well-dressed group walked for Huntingtons Queensland at the annual Bridge To Brisbane event; a simple 5km walk in glorious Brisbane weather to celebrate our community, and to encourage support from one another. We are already planning to participate next year, so make a note in your diaries: Sunday, August 28th 2016. Come walk with us!
  • Huntingtons Queensland welcomed Kristen Powers to Brisbane for the free public screening of her documentary: Twitch. Kristen’s powerful story about the genetic testing process for Huntington’s disease was very well-received, and we were pleased to offer such an engaging and enjoyable evening to the community.

 

 

Of course there were countless more achievements, celebrations, and moments of joy and hope, both personal and public. With the advances in research, and the current clinical trials for gene-silencing drugs occurring as we speak overseas, our community has much to be hopeful for, and we will continue to keep you informed of research updates as we hear of them.

So, as we prepare to say ‘farewell’ to 2015, we thank you all for your support, feedback, patience and commitment throughout this year. We wish you and your family a peaceful, happy and hopeful Christmas and New Year period, and we look forward to 2016.

Wishing you a merry Christmas and a Happy New Year,

The Team at Huntingtons Queensland.

An Introduction

We are so pleased to welcome you to our new website – a culmination of the most up-to-date information available, and personalised for a local audience. Take some time to read through the information, or if you’re a bit pressed for time, have a look at the fantastic video below. This was created by the Hopes team at Stanford, and we think it is a brilliant, thorough explanation of Huntington’s disease.

Twitch : The Documentary

Huntingtons Disease Genetic Testing

We’re counting down to our biggest event for September Awareness Month – Twitch: The Documentary! Screening this Wednesday evening in Coorparoo, Brisbane, we still have some seats available. Comment below or email frc@huntingtonsqld.org.au to reserve seats for you and your friends for this free community event.