New HD drug could be ‘ground-breaking’

A breakthrough that is being hailed as the most important development in HD since the HD gene was identified back in 1993 has been announced by pharma companies Ionis and Roche. It involves the first human trial of a huntingtin-lowering drug, IONIS-HTTRx, which demonstrated a reduction in mutant huntingtin in the nervous system. The aim of the trial was to test tolerance and the safety of the drug before moving to further development. While the breakthrough is certainly important, it is too early to know if the symptoms of HD improve as a result of the drug. The initial trial enrolled 46 people with early HD symptoms in Germany, Canada and the UK. Read more at https://en.hdbuzz.net

 

Annual general meeting (AGM) 2017

Huntingtons Queensland will host its annual general meeting (AGM) on Thursday 16 October starting from 6pm.

The AGM is an opportunity for members to vote on important agenda items that are raised by the current Board of Directors, and also vote for nominees for the incoming Board of Directors. Members have been mailed an invitation to attend, as well as the agenda and proxy voting forms if they are unable to attend and wish to vote via proxy.

Members of the general public, as well as clients, donors and other organisational supporters, are welcome to attend. The AGM is a great opportunity to hear about some of the important tasks the organisation has been accomplishing, and the intended direction for the next year.

The organisation will soon publish our new strategic plan, outlining our goals and intentions for the next three years, as we move towards greater financial independence, a renewed focus on supporting our clients through a range of services, and supporting research in the hope of bringing an end to Huntington’s disease.

Our annual report for 2016/17 financial year will also be unveiled, celebrating and reporting on the multitude of activities our team has facilitated this past year. The report will be published online shortly after the AGM, with digital copies emailed out to Members as well.

AGM details are as follows:

Date Thursday 16 November 2017

Time 6pm

Location Huntingtons Queensland, Florence Dannell House, 385 Ipswich Road Annerley QLD 4103 (some on-site and street parking available)

Light refreshments will be provided for attendees.

If you would like to attend our AGM, you are very welcome. Please RSVP for catering purposes by emailing or calling Susan at admin@huntingtonsqld.org.au or 07 3435 4300.

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!