SUMMER 16/17 NEWS FROM THE CEO S U P P O R T I N G P E O P L E L I V I N G W I T H H U N T I N G T O N ' S D I S E A S E

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1 S U P P O R T I N G P E O P L E L I V I N G W I T H H U N T I N G T O N ' S D I S E A S E SUMMER 16/17 NEWS HUNTINGTONSQLD.ORG.AU FROM THE CEO Summer 2016/17 has been filled with wonderful support from our community fundraisers and generous donors from the Huntingtons Queensland community. Our 2016 Christmas Appeal raised over $6,000 and we sincerely thank all of our donors for their generous contributions. My name is Sonja Gilchrist and I have had the pleasure of leading Huntingtons Queensland since 21 November CEO Jan Samuels, who was appointed in late October 2016 following the resignation of Bernard Wilson in July 2016, is currently on sick leave. My contract covers Jan s absence, which looks to be until April We wish Jan a full recovery to good health. This year will see Huntingtons Queensland celebrate 40 years since families and friends established the Association in Support group meetings will continue to be a focus for HQ Client Services and sharing information about the National Disability Insurance Scheme (NDIS) will be a key theme. Please feel welcome to contact me at the HQ Office on or via at ceo@huntingtonsqld.org.au Sonja Gilchrist A/ CEO Huntingtons Queensland N O M A D I C 2 4

2 FUNDRAISING, BEQUESTS & GRANTS RUNNING & MUSIC September is Huntington's Disease (HD) awareness month and we were so pleased that community fundraiser, Kelly Stamnas, chose to host a fun run in support of Huntingtons Queensland (HQ) in September Her event, "Running for Nan's HD", raised over $10,000 for HQ which has already been put to great use in running support programs and providing assistance to clients. Kelly plans to hold the event again in 2017 and participants are looking forward to more running fun and raising awareness of HD. A special thanks to Photography2Envy who provided the photography for the event. Another community fundraiser we wish to thank is Forte Music School. The school held a fundraising day for HQ and presented HQ with a large cheque as a result of their efforts. It is very special when children get involved with fundraising to help others in need. It was an educational event for all involved. HQ has many wonderful donors and fundraisers to thank and offers their heartfelt thanks as always. Much gratitude also to those who participated in the Bridge to Brisbane in 2016 in support of HD. HQ's 2016 Christmas Appeal was successful due to a new, softer, approach to existing donors. The generosity of these supporters cannot be stressed enough and HQ is looking forward to a productive year ahead thanks to their ample donations. HQ has received generous grants since our last update and would like to specifically mention the Gambling Community Benefit Fund and the Sunnybank Community & Sports Club. HQ was saddened to hear of the passing of community member, Margaret Rose Turner, and were very touched when she left a generous bequest to the organisation. Vale Margaret Turner. HQ SUMMER 16/17 2

3 YOU ARE NOT YOUR ILLNESS. YOU HAVE AN INDIVIDUAL STORY TO TELL. YOU HAVE A NAME, A HISTORY, A PERSONALITY. STAYING YOURSELF IS PART OF THE BATTLE. RESEARCH UPDATES b,c3njccjch8arlhblu3acih+rii3<3hhrn0rnh@q3h@ij30h?nnjcn<jrn_ch/cc3c3hv?/wh,jcqcjwh8rahccuhlrnj@chcnhlc,3yh i@cchcchhuarlcccn<ha3cnijh8rahh0cc3c3hscj@hnrh,na3y h i@3hn3shja3jl3njh,na$30hj@3h,jcqcjwhr8hh<3n3jc,h LnjjCRNha3cURNcC$I3h8Rahc3q3a3hLnc,I3hUaR$I3LchN0h CNqRInNjawhjsCj,@CN<h8Rahc3q3aIhLRNj@chCNhhjaCIhsCj@h LC,3Yh i@3huarj3cna$c30hja3jl3njhcch0lcnccj3a30hqchhccn<i3h CNE3,jCRN.hN0hC8hCjh,RNjCNn3chjRhc@RshUaRLCc3hCNh8RIIRsAnUh cjn0c3c.ha3c3a,@3ach@ru3hjrhj3cjhcjhcnh@nlnhjacichscj@cnh j@3hn3ujh8cq3hw3acyh /ahbncnnhknjrqnc.hha3c3a,@3ah8rahj@3hmncq3accjwhr8h [n33ncin0hn0hr3ci3whk30c,ih`3c3a,@.hcjn0c3chci33uh 8CN0hN3shUaRcU3,jCq3hswchjRhCLUaRq3h\nICjwhR8hIC83h8Rah U3RUI3hsCj@h?/Yhi@CchLC<@jhL3N.hCNhj@3h8njna3.h$3CN<h$I3h jrhc3i3,jhh$3jj3ahjcl38al3h8rah0an<ch0lcnccjajcrn.hrah 8CN0CN<hswchjRh@3IUhUjC3NjchCLUaRq3hj@3CahcI33U.hRah3q3N 8CN0CN<hN3shURccC$I3hcjaj3<C3chjRh03q3IRUhN3sh0an<ch8Rah ja3jcn<h?/y h B8hwRnha3hCNj3a3cj30hCNh<3jjCN<hCNqRIq30hsCj@hj@Ccha3c3a,@h UaRE3,jhwRnh,Nh,RNj,jh/ahKNjRqNChRNhzehkelShSe9zY NATIONAL HD CONFERENCE?nNjCN<jRNchpC,jRaCh@3I0hh,RN83a3N,3hCNhn<ncjhlzSfh j@jh$arn<@jhjr<3j@3ahj@3h?nnjcn<jrn_ch/cc3c3hv?/wh,rllnncjwhcn,in0cn<hl30c,ih3uu3ajc.ha3c3a,@3achn0h,rllnncjwhcnuuraj3ach8arlh,arcchncjaicyh 04 Hna3Nhra0.h?nNjCN<jRNch[n33NcIN0h+IC3Njhb3aqC,3ch +RRa0CNjRa.hjj3N030hj@3h,RN83a3N,3hN0h8RnN0hCjhjRh$3hh srn03a8nihruurajnncjwhjrh,rii$raj3hscj@hrj@3ah?/h Ra<NCcjCRNchN0hIcRh3uUIRa3hj@3hsRaGhj@jh@ch$33Nh,aaC30hRnjhCNha3c3a,@hN0hcnUURajY H Q S U M M E R 1 6 / 1 7 3

4 /Ca3,jRadhINhK,FCNI3cc.hHC83hK3L$3a BOARD UPDATE Huntingtons Queensland's (HQ) Annual General Meeting (AGM) was held on the 17th of November HQ was pleased to begin the 40th year of this organisation and looks forward to celebrating this with the community. A long time supporter of HQ and former Board member, Alan McKinless, was awarded a Lifetime HQ Membership at the AGM. Alan regularly volunteers and donates to the organisation and HQ is thrilled to add him to the ranks of lifetime members. At the AGM a new, yet familiar Chairperson was elected, Gerry Doyle. Also elected were Cate Barrett as Vice-Chairperson; Janice Szlapak as Secretary; Janifer Willis as Treasurer; and Peter Weekes, Gwen Pratten and Jeff Buchanan as Directors. The HQ Board is well balanced with personal experience and professional acumen, placing HQ in a positive position to navigate challenges such as the National Disability Insurance Scheme (NDIS).?/vQhncjaIChhM3shx3IN0h+LUhlzSehjh+naaCLnN0Ch `3,a3jCRNh.h[n33NcIN0 CLIENT SUPPORT It has been a busy year and summer for the Client Services team. Support groups and regional trips continued to be a major focus along with phone support. Most recently, HQ was involved with supporting the first ever Huntington's Disease Youth Organisation (HDYO) camp to be held in Australia. Fifty young people from Australia and New Zealand attended the camp in January which was held in Currimundi, Queensland. HQ was pleased to be quite involved given it was held in our sunshine state of Queensland and HQ Client Services Coordinator, Lauren Ward, attended and mentored a group of young people. Events like these are beneficial for youth affected by Huntington's Disease as they often have never met families in similar situations to theirs. Also, it can be hard for youth to connect in a traditional support group setting so the camp was an excellent way for young people to engage and network. H Q S U M M E R 1 6 / 1 7 4

5 Huntingtons Queensland Support Groups March to June 2017 UaCI Kw DnN3 Sh h rh lh h ih kh h 7h :h h bh 9h h bh fh h K eh h ih 4h h rh Oh h ih Szh 7h SSh bh Slh bh Skh Kh S:h ih S9h rh #M2 Sfh ih Seh 7h irgbmh S4h bh SOh bh lzh Kh lsh ih ;QH/h llh rh HQ;h lkh ih l:h 7h l9h bh lfh bh leh Kh l4h ih BTbh loh rh kzh ih ksh 7 Sh h bh lh h bh kh h K :h h ih 9h h rh ;vkh fh h ih?2`g#mmh eh h 7h 4h h bh ;H/h Oh h bh Szh Kh SSh ih `2/h Slh rh #`Bbh Skh ih S:h 7h T?h S9h bh Sfh bh Seh Kh T?h S4h ih SOh rh lzh ih lsh 7h irmbh llh bh lkh bh l:h Kh l9h ih T?h lfh rh leh ih l4h 7h loh bh kzh b Sh h Kh T?h lh h ih kh h rh :h h ih 9h h 7h fh h bh eh h bh 4h h K Oh h ih iqqh Szh rh#`bbh SSh ih Slh 7h Skh bh S:h bh S9h Kh Sfh ih K+h Seh rh S4h ih SOh 7h irmbh lzh bh lsh bh llh Kh lkh ih BTbh l:h rh l9h ih lfh 7h leh bh l4h bh loh Kh kzh ih ksh r Sh hih lh h7h kh hbh :h hbh 9h hkh fh hih eh hrh 4h hih Oh h7h bmmh Szh bh SSh bh Slh Kh Skh ih ;QH/h S:h rh #`Bbh S9h ih Sfh 7h irmbh Seh bh S4h bh SOh Kh lzh ih lsh rh HQ;h llh ih lkh 7h l:h bh l9h bh lfh Kh leh ih l4h rh loh ih kzh 7h Brisbane Monthly Bundaberg Gladstone Hervey Bay Ipswich Gold Coast Gympie Logan Mackay Redlands Sunshine Coast Toowoomba Townsville Monthly Support Groups are open to anyone effected by Huntingtons Disease, and their families. We encourage all to attend and connect with others sharing their experiences. Huntingtons Disease is hard and we cannot go it alone. For venue information, and to RSVP please contact us through our website, on (07) or via supportgroups@huntingtonsqld.org.au. H Q S U M M E R 1 6 / 1 7 5

6 H U N T I N G T O N ' S I S A R A R E D I S E A S E O F T H E B R A I N. T H E R E I S P R E S E N T L Y N O C U R E. S Y M P T O M S G R A D U A L L Y W O R S E N O V E R T I M E. Considering a donation? Online: Visit huntingtonsqld.org.au and select donate now Cheque: Make your cheque out to "Huntingtons QLD" and send to our PO Box Direct Deposit: Bank transfer to Account Name: AHDA(Qld), BSB: , Accnt: , Ref: SN1617 Phone: You can call us on to make a donation by Credit Card Huntingtons Queensland Florence Dannell House 385 Ipswich Road (PO Box 635) ANNERLEY, QLD 4300 Phone: (07) Fax: (07) admin@huntingtonsqld.org.au Web: huntingtonsqld.org.au If you believe in a better life for those living with this most challenging disease, please make a donation today and consider Huntingtons Queensland for a gift in your will. H Q S U M M E R 1 6 / 1 7 6