Collage of photos from Running for Nan's HD 2019

Spring 2019 news flash

Continued on page 4

THANK YOU!The dust has settled from the annual Running forNan’s HD fun run, held on Sunday 15 Septemberat Wynnum foreshore, and this year was thebiggest event yet!

Organised by our community champion KellyWoodland, in honour of her Nan who lives withHD, we had a record-breaking 202 registrations.

Huge congratulations go to the winning speeddemons:

We are humbled to share the news thatregistration and raffle ticket sales raised morethan $6,400 – nearly $1,400 more than last year.

More than 150 walkers and runners (and fivelovely dogs) gathered in Wynnum at dawn, withthe remaining participants completing their eventvirtually.

Fastest 10km - Geoff and Liz

Fastest 5km - Javana and John; and

Left: 5km winners Javana & John(happy 11th birthday, John!)Right: 10km winners Geoff & Liz

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Event calendarVisit huntingtonsqld.org.au/support/whats-on for a list of all upcoming events and support groups.

13 - Brisbane support12 - Toowoomba visit

21 - AGM26 - Mackay support

November

28 - Gladstone support

22 - Logan support 2 - Office reopens 8 - Brisbane support

January

Don't miss our nextcommunity dayWe are excited to invite you to another popularcommunity fun day, this time on Sunday 13October at The Workshops Rail Museum inIpswich!

Entry and lunch will be provided for free,thanks to the generosity of the AleccaMcKinless gift.

To register, please visithuntingtonsqld.org.au/support/workshops-rail-museum or call our office on 07 3435 4300.

RSVPs close on 3 October, so get in quick!!

7 - Queen's birthday

9 - Brisbane support

17 - Townsville info group22 - Gympie support

October

public holiday

13 - Community fun day (Ipswich)23 - Cairns support

3 - Redlands support

10 - Gold Coast support 17 - Ipswich support

December

14 - Christmas party!

13 - Sunshine Coast support

Are you heading to the world-firstInternational Young Adults Conference for 18- 35-year-olds impacted by HD in Glasgow?

The conference will run from 9 - 11 May2020, and will welcome people from aroundthe world. If you're heading over, let us knowso we can follow your journey, and get you incontact with other Aussies in attendance!

Join Jenni in Scotland!

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Have your say at the Aged Care and Disability RoyalCommissionsYou may be aware of two royal commissionsthat are currently underway around Australia –one into standards and quality within the agedcare sector, and the other into violence, abuse,neglect and exploitation of people with disability(also referred to as the Disability RoyalCommission).

This is a rare opportunity for your voice andyour concerns to be heard.

Huntingtons Queensland is also working withother state HD associations on submissionsthat cover policy issues relevant to familiesimpacted by HD – but nothing is as powerful asyour own personal story and experience.

You can learn more about the Disability RoyalCommission by visitingdisability.royalcommission.gov.au and youcan also make a submission through this link.

If you have a story to tell, we encourage you tosend a submission to the commissioners. If youneed help with preparing a submission, pleasegive us a call on 07 3435 4300.

Come party with us!It’s time to put on your festive Christmas shirtand get ready to party, because our annualChristmas party is back!

So come along to celebrate the festive seasonand enjoy a spirited Christmas lunch!

DATE: Saturday 14 DecemberTIME: From 11amLOCATION: Florence Dannell House, 385 Ipswich Road, Annerley

This year, it’s going to be bigger and better thanever! We will be hosting a free community BBQat Florence Dannell House, 385 Ipswich RoadAnnerley (our office location), and everyone iswelcome to attend.

Santa will have dropped some goodies off foreveryone, and we’ll have some fun activities forthe kids.

RSVP: Essential! Please visithuntingtonsqld.org.au/Christmas to register.

You can learn more about the RoyalCommission into Aged Care byvisiting agedcare.royalcommission.gov.auand you can also make a submission throughthis link.

**Don't forget to come dressed in festive clothing, and be on your best behaviour in case Santa happens to drop in!!**

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Start training now![continued from front page]

We’re guessing that the event will also needeven more volunteers next year. Please getin early to offer your help by emailingadmin@huntingtonsqld.org.au.

Running for Nan’s HD will be back in 2020,but will be held earlier in the year to coincidewith international Huntington’s DiseaseAwareness Month.

Of course, the day could simply not operatewithout all the wonderful volunteers who showedup bright and early with smile on their faces, tohelp the event run smoothly. We are very grateful!

Inspire Athletic Team Ivey from HarcourtsCoorparoo JT Signs The Butcher Shoppe Cannon Hill And the many individuals who donatedfabulous raffle prizes

We would also like to say an enormous thankyou to Kelly’s wonderful sponsors, whose supportmeant that all every dollar raised will go straightto supporting people impacted by Huntington’sdisease. Thank you so much to:

Save the date now for Sunday 17 May2020, and if you just can’t wait, you can signup already.

Register at huntingtonsqld.org.au/run.

Lots of smiling faces at Running for Nan's HD 2019!

Play for Purpose round closes soon!You would already have heard us talkabout the great new charity raffle Play forPurpose.

Well the next round closes in only a fewshort days, at midnight on Tuesday 15October!

Each ticket has a 1 in 34 chance ofwinning, and there are thousands of prizeson offer every draw.

Best of all, Huntingtons Queensland receivesat least 50% of each ticket sold, so not onlyare you giving yourself a shot at some life-changing prizes, but you are helping changethe lives of people impacted by Huntington'sdisease.

You could come away with a gold bullion, anew car, an overseas holiday, or anynumber of other awesome prizes!

Thank you for supporting this great charityinitiative, and good luck for the next round!

Buy tickets at:playforpurpose.com.au/huntingtons-qld

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Please save the date for our 2019 AnnualGeneral Meeting (AGM) on Thursday 21November from 6pm at HuntingtonsQueensland’s office (Florence Dannell House,385 Ipswich Road, Annerley).

We are also hoping to welcome guest speakerDr Robert Adam, clinical neurologist andBrisbane leader of the Wave clinical trial.

AGM notice

Everyone is welcome to attend this freeevening. RSVPs are essential, as we willprovide light supper.

Friday Social updateAfter a few months trialling our Friday Socialsessions, and after feedback from ourcommunity, we will not be hosting any moreFriday Social sessions. We are excited toannounce, however, that we will still be findinga way to get these information sessions to you.

We will be switching to a more accessibleformat – online videos, blog posts and digitalquestion-and-answer sessions – so everyonecan get involved during a time that suits them.

For social opportunities, make sure you comealong to our support group meetings,community fun days, and the annual forum,held in May each year.

Top: Kelly Woodland, CEO Jan Samuels and presidentJason de Bakker at Running for Nan's HD 2019Bottom: Board and staff strategic planning activities

Give back to our HDcommunityDo you have board experience? HuntingtonsQueensland is looking for one or twopeople to join our governance team.

Roles are voluntary and generally requirebetween five and ten hours’ commitment amonth. We are especially keen to hear frompeople with NFP board experience orprofessional skills in business development,business management, the NDIS, governmentrelations and corporate sustainability.

In the first instance please contact JanSamuels, ceo@huntingtonsqld.org.au, formore information.

Dr Adam, if available, will provide a Wave trialupdate, and give more detail on the Brisbanesection of the trial.

Please email events@huntingtonsqld.org.au orcall 07 3435 4300 if you would like to attend.

Donations of $2 and over are tax deductible. Please provide your contact details so we cansend you a receipt.

Make a donation this Spring

Name:

Donation amount:

Visa or MasterCard:

Card Number: Card expiry date:

Name on card:

Signature:

Postal address:

Email: Phone:

Enjoy a magical day out

Tickets may be made available to us throughthe generosity of a local Lions Club, and areavailable to children and their familiesimpacted by disability or disease.

We may have the opportunity to offer freetickets to families with children to attendInternational Entertainment's World Festival ofMagic, held in Brisbane on 3 November.

World Festival of Magic is coming to Brisbane inNovember, with tickets courtesy of a local Lions Club.

Holiday closuresOur office will be closed for the Queen’s birthdaypublic holiday on Monday 8 October. We will also be closed over the Christmas breakfrom Tuesday 24 December to Wednesday 1January inclusive. We will be back in the officefrom Thursday 2 January 2020.

If you need support during these times, pleasecontact Lifeline on 13 11 14, and if it is anemergency, please call 000. We wish you, your family and friends a peacefulfestive season, and look forward to working withyou in 2020.

If you would like to find out how you canattend, please contact us in the office on 07 3435 4300 or emailadmin@huntingtonsqld.org.au.