Preparing to say farewell to 2017

It’s been a big year at Huntingtons Queensland, and although 2017 is winding down, things are as busy as ever in the office!

At the time of writing, Lauren is currently somewhere between Brisbane and Bundaberg attending support group meetings and meeting with clients, and Tressa is at the HD Clinic with our trusty volunteer Alan to provide any support they can to the clinic attendees for that month.

We still have a few support group meetings and other events coming up before we say farewell to 2017 – you can find a full, up-to-date calendar of coming events here. If you’d like to know about events coming to your area, you can also ask us to add you to the mailing list for your local area – just give our office a call on 07 3435 4300 and we’d be very happy to make sure sure you receive invitations.

Our office will be closing between the Christmas and New Year public holidays to ensure our team has a few days to recharge, before we are back in the office and answering calls from Tuesday 2nd January.

We’ll be sharing another newsletter with you all before the end of the year, giving some exciting updates on our many activities, and to wish you all a happy end to the year and a safe start to the next one.

Til then, keep an eye on our Facebook page for research updates, upcoming events and other useful information.

Cheers!

The team at Huntingtons Queensland

Running for Nan’s HD 2017

Are you one of the many people who listed ‘get fit’ as a new year’s resolution? What about ‘run 5km’? What about ‘support people living with Huntington’s disease’?

If you said yes to any one of these questions, then we have the perfect event for you!

Running for Nan’s HD 2017

You may remember the fabulous community fun run, Running for Nan’s HD, which was held in September 2016 by the indefatigable Kelly Stamnas. Kelly ran more than 2,200km and raised more than $15,000 for families living with Huntington’s disease. This year she is back and running again, and hopes to raise even more than last year.

Entry tickets are available now and are only $25 each – that covers entry, finisher’s medal, sausage sizzle, and will help support the work of Huntingtons Queensland.

You can find out more details through the event registration page on Sticky Tickets, our charity partner for the event, or by visiting our webpage on the event: Running for Nan’s HD 2017.

We hope to see you there!

1 in 20 people with HD have no home tonight…

 

This winter there are many people with Huntington’s disease with no home to go to.
They desperately need your support.

By donating to the Huntingtons Queensland winter appeal, you can help others living with HD to avoid a life of homelessness while accessing the services they need.

Your support will:

  • Provide non-clinical counselling in person or over the phone
  • Facilitate peer-to-peer support groups around the state
  • Ensure people with HD are linked in to other support agencies
  • Help to educate nursing staff and social service providers about Huntington’s disease and its impact.

This winter, please give generously – because everyone deserves a safe, appropriate place to live, and life with HD is already tough enough.

Donate Now

*Names have been changed for client privacy

Ipswich NDIS Information Sessions

Save the date!

The National Disability Insurance Scheme (NDIS) is coming to your area soon – it starts on 1 July 2017 in Ipswich and surrounding areas, as well as the Lockyer Valley, the Scenic Rim and the Somerset Regional Council areas. Are you ready?

We are part of the NeuroCare Network, an alliance of not-for-profit organisations focused on ensuring people living with a progressive neurological disease receive the support and services they need. This network is ready to help you understand the NDIS and what it could mean for you.

One of our NeuroCare Network partners, MS Queensland, is holding free workshops in the Ipswich area, and you’re invited. They will cover what the NDIS means to you and how to access it.

So please, select the one that suits you best, mark it in your calendar now and call 1800 177 591 to save your place!

Ipswich
30 January 5:30 – 7:30 pm Ipswich Central Library Auditorium, 40 South St, Ipswich

Springfield
24 February 5:30 – 7:30 pm Springfield Lakes Community Centre, 54 Springfield Lakes Boulevard, Springfield Lakes

This event is sponsored by Huntingtons Queensland on behalf of the NeuroCare Network:

  • Alzheimer’s Australia (Qld)
  • Epilepsy Queensland Inc
  • Friedreich Ataxia Network (F.A.N.)
  • Huntingtons Queensland
  • Leukodystrophy Resource and Research Organisation Inc
  • MND Association Queensland
  • MND and Me Foundation
  • MS Queensland
  • Muscular Dystrophy Queensland
  • Parkinson’s Queensland
  • Youngcare

A Client Story this Christmas

John* can’t cook dinner for his family any more. It’s too difficult to manage the many steps involved, so he simply leaves his wife Laura to do that. He used to be a great business manager, but he hasn’t been able to work for three years now. Sometimes his arm twitches, and he slurs his words. Occasionally he gets frustrated for no apparent reason.

Although his diagnosis was five years ago, John’s wife, Laura, thinks he had symptoms for a while before that. She first noticed that he started to have trouble walking properly. The disease has progressed quickly and Laura is now John’s full-time carer as well as mother to their two young children.

John is just one of the hundreds of people in Queensland living with Huntington’s Disease (HD). This terminal, genetic disease is hereditary meaning that John and Laura’s children, aged 10 and 13, are both at risk of developing HD.

There is no cure for HD, and most live no more than 10 – 25 years once symptoms onset, which include:
• Uncontrollable jerking movements (chorea)
• Difficulty walking, talking and swallowing
• Emotional volatility, behavioural and personality changes
• Impaired cognitive abilities (the capacity to plan, organise and concentrate)

Over time, John will need higher care than Laura can provide. They will need to look at care facilities in their region, which will most likely be an aged care nursing home. As much as John doesn’t want to enter somewhere for older people whilst only middle-aged, alternative age appropriate facilities simply do not exist or are not financially viable.

What will happen to this family?

Thanks to our generous donors, Huntingtons Queensland works on the front line to provide families with the services they need to manage day by day. We deliver information, education, programs and advocacy for our clients and those who work with them. Huntingtons Queensland is the only organisation providing specialised services to Queensland families.

By making a donation to our Christmas appeal, you will help John and others like him access the support and advocacy they need and deserve. Your support will go towards:
• Individual, family and carer support in person and over the phone
• Family support groups
• Respite holidays for families and carers
• Information provision to families and healthcare professionals
• Education of and assistance to service providers
• Advocating on behalf of people living with HD
• Raising awareness in the wider community of HD and its impacts

This Christmas, we ask that you give generously to the Huntingtons Queensland Christmas Appeal to help families in need of support.

*Names have been changed for client privacy.

Australia HD Youth Camp 2017

 

The Huntington’s Disease Youth Organization (HDYO), together with all the HD Associations across Australia and New Zealand, are excited to host the first Australia and New Zealand HD Youth Camp! The goal of camp is to offer young people the chance to meet other young people impacted by HD, to learn about HD through educational workshops, to share experiences and receive support through sharing sessions in camp groups and to have plenty of fun participating in the many on-site activities, such as swimming, stand up paddle boarding, archery and much more. We hope young people attending camp will benefit by feeling less isolated, more supported, as well coming away from camp with an improved understanding of HD and strong peer connections with other young people in similar situations. There will be an experienced HD team of professionals and volunteers on-site to support young people at all times.

art-camp-oz-nz-2017-1-caed6a5ff2ba7f4ee58fe2846d91372a

Who can attend: Young people ages 15-25 that live in Australia or New Zealand and are impacted by HD (if you are just above or below this age range but are interest in attending, contact monica@hdyo.org to discuss further as we are somewhat flexible with this)

How many spaces are available: We have capacity for about 25 young people to attend the camp.
When will it be: Arriving Friday 13th of January– Leaving Monday the 16th of January 2017
Where will it be: Sunshine Coast recreation Centre, 80 Currimundi Road, Currimundi, Queensland, Australia
Cost: Free!!!! The camp, accommodation, food and travel costs are all covered. Campers will be responsible for any cost associated with baggage fees and campers should have some money for airport snacks and incidentals.

How to apply

Simply fill in the online application form here.
Not sure if camp is right for you? See highlights from the North American HD Youth Camp last year:

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Application Process

Applications can be submitted from August 1st until November 10th 2016. If there are more applicants than places we will prioritize those young people who may not have a lot of support in their local community. Notifications of application acceptance will go out no later than November 11th 2016. If you are selected to attend camp, a staff member will reach out to you and your family with details about moving forward and details about planning travel.

Frequently Asked Questions:

How will I/my child get to Queensland?

If you are selected to attend camp, we will arrange travel for you. If you are within driving distance, we ask for your assistance in driving your child to camp or the Brisbane area where all campers will fly in to.

Who is running the camp?

HDYO is organizing the camp, with the support of Monica, the HD Youth Worker for Huntington’s Western Australia (HWA). There will be staff from HDYO and Australian & New Zealand HD organizations supervising the camp, HD professionals from around the country, and a trained and trusted group of young adult volunteers from the HD community from Australia and New Zealand will form the volunteer support team. All camp activities are supervised by certified staff that are employees of the Sunshine Coast Recreation Centre.

  • Insurance: All campers are required to have travel insurance. You should check your policy for travel coverage. The camp is fully insured and there will be extra event coverage organized by HDYO as well.
  • All families will be required to sign a release alleviating HDYO and our partners of responsibility in the case of an accident or injury.
  • Medical Treatment: Qualified first aiders and trained medical professionals will be on-site as part of the camp team. Also a list of medical facilities in the area will be included in a packet sent to families prior to arrival and discussed on the pre-camp call.

What experience do the staff have with supporting young people and camps?

art-camp-oz-nz-2017-2-9cf009b302a414d7ce7c2c9bf4d75181HDYO staff will be attending to help run the camp, HDYO has a wealth of experience providing successful youth camps in Europe and North America, and other events for young people impacted by HD around the world. Monica, the HD Youth Worker for HWA has many years of experience working with young people and running camps. Our staff team will have plenty of experience working with young people in the HD community, but we will also be bringing other HD professionals such as social workers and genetic counsellors from the region to help with educational sessions. We will also have a trained and trusted volunteer team of young adults from the HD community in Australia & New Zealand who will be with the young participants at all times.

What will each day look like?

Each day will consist of a good balance of recreational activities, educational sessions and sharing/support sessions. Our camp schedule has been adapted over the years based on feedback from young people, we also look at what each applicant wants from camp and try to accommodate that into our sessions. A full agenda will be provided to each family prior to the start of camp.

What support is available to my child before and after camp?

art-camp-oz-nz-2017-3-854b92fe50b70355421a5368bd720464The HWA youth worker, Monica Cazzolli, will be scheduling at least one call prior to camp to discuss the family’s situations, get a sense of any concerns and begin to build a relationship with the young person. The youth worker will be holding calls with the family post-camp as well to check in and make sure you are feeling ok. Also, there will be a contact person provided for your local HD Association who will provide you with support options in your region. If an issue is raised by the young person at any time (before, during or after camp), Monica and HDYO will work with you to ensure you get the best support available in your region.

Who is funding the camp project?

The Australia and New Zealand HD Youth Camp is supported by a significant grant to HDYO from Teva. Some Australian and New Zealand Associations are also kindly offering support if required.
Have a question/query about the camp that isn’t answered above? Contact us on 07 3435 4300 or admin@huntingtonsqld.org.au

This camp is supported by:

  • HDYO
  • Huntington’s Victoria
  • Huntington’s New South Wales
  • Huntington’s Western Australia
  • Hungtingtons Queensland
  • HDA Wellington
  • HDA Christchurch
  • HDA Auckland

A special thank you to Teva for providing significant funding in support of the camp.

Bridge To Brisbane 2016

Some cheeky Bridge To Brisbane participants
Some of our awesome 2015 team!

The team at the HDQ office are in disbelief that it’s already half-way into 2016 – it doesn’t seem all that long ago that we were watching fireworks to celebrate the start of the year, and now we’re looking at tax returns and planning for the last part of the year! But it’s exciting for us, because that means it’s time to prepare for Bridge To Brisbane!

We had a very enthusiastic team of 30 people walk 5km last year to prove their support. This year, we’re hoping for 60. So sign up, bring your mates, and help us reach our goal.

Sign up

You can join Team Huntington’s when you sign up here. The great thing about this year is they’ve opened teams up to include both 5km and 10km distances, so you can choose not only your pace but also your distance, and still support the team. We’re also opening up the activity this year to ensure everyone participates how they want. You don’t need to walk as a group – you can do your own thing, walk as a family, or join up with other team members and tackle it as a group. However you want to do it, we’re just grateful to have your support.

We’re also really pleased to have branded shirts available to participants, if you’d like to walk with one. You can purchase a good-quality shirt at our new online mini-store here.

Sponsor

The great thing about Bridge To Brisbane is it gives us the opportunity to raise some much-needed funds to support our services. You can help us do this by either setting up an Everyday Hero account to raise money, or by sponsoring a participant through their Everyday Hero account. Just visit the team page, where you can either make a donation to the team, or choose an individual to sponsor. Visit the page here.

Thank you for helping make this year’s Bridge To Brisbane the best one yet!

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