CARER. Herston Village helping families for 25 years JUNE 2014 ISSUE TWO

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1 CARER JUNE 2014 ISSUE TWO Herston Village helping families for 25 years The Sullivans are just one of the families who have found a home-away-from-home during the 25 years since the Leukaemia Foundation s Herston Village (formerly Mincom Village) was opened. Since 1989 Herston Village has provided 382,000 nights of free accommodation - equivalent to more than $38 million in direct savings to patients and their families. Herston Village has enabled greater access to treatment for regional patients, helping to save Queenslanders lives. Aimee and her two-year-old son, Alex, were flown by chopper from their home in Dysart to Brisbane within hours of Alex being diagnosed with leukaemia last September. Getting the results of Alex s blood test changed our world forever, Aimee said. It was terrifying as Alex was also fighting a serious bacterial infection definitely our darkest hours. The oncology team took care of our medical needs, and thankfully the Leukaemia Foundation took care of the rest. We were over 1000kms from home and wondered how we would afford accommodation. The Leukaemia Foundation provided a two-bedroom unit free of charge at Herston Village, just 800 meters from the Royal Children s Hospital. It became our home while Alex received treatment - a very special place where our family could be together, surrounded by others who knew what we were going through. We are thrilled that Alex is now in remission and we will be eternally grateful to the Foundation and every one of its generous donors whose kindness has made such a difference to our family. Alex and Aimee

2 New hope for stem cell transplant recipients With the help of our supporters, the Leukaemia Foundation of Queensland has funded PhD scholarship recipient Katie Lineburg with $40,000 per year for three years to explore the cells and pathways that contribute to chronic graft-versus-host-disease (GVHD). It is hoped the research, being undertaken at the QIMR Berghofer Medical Research Institute in Brisbane, will lead to improved therapies and prevention for patients. GVHD can be a life-threatening illness which occurs in a majority of stem cell transplant patients, with up to 40 per cent of cases leading to death. GVHD is triggered when the transplanted donor immune cells begin attacking the host s skin and internal organs, eventually causing fibrosis (similar to scar tissue). Over time this destroys the normal tissue and causes internal organ failure. Katie said she hoped her investigations would lead to a better understanding of what drives the disease. I hope to define the proteins that regulate the cellular processes involved in chronic graft-versus-host disease as well as identifying the cells that produce these proteins, she said. This information would allow us to develop novel therapeutics to improve transplant outcomes and broaden its clinical application. Katie said that while it was still early days, her research looked promising. We ve identified several molecules in particular that appear important early in the post-transplant period and we can now focus on different ways to manipulate these molecules to find out how they impact on graft acceptance or rejection. Through her research, Katie also aims to explain how the transplanted donor immune cells change the host s immune system. Katie has worked in the research field for 10 years, inspired to focus her efforts on medical disorders following the death of her mother to cancer and a good friend being diagnosed with chronic myeloid leukaemia (CML). My personal experience with cancer has definitely inspired me Researcher Katie Lineburg and keeps me focused on the bigger picture in my day-to-day work in the lab, she said. The Leukaemia Foundation of Queensland is proud of its longterm partnership with QIMR Berghofer Medical Research Institute and these scholarships are part of our plan to build greater capacity in blood cancer research and ultimately improve outcomes for patients. The Leukaemia Foundation of Queensland s five-year strategic plan for research is to increase our financial investment spanning scientific, clinical, translational and psychosocial fields of research to $2 million each year by The Foundation is committed to growing research and improving outcomes for patients, and needs the continued financial help from supporters like you to achieve this goal. New home for central office The Leukaemia Foundation of Queensland s central office has moved to a new home after being located in Brisbane s CBD for 13 years. The Foundation purchased a building to house its administrative hub at St Pauls Terrace, Fortitude Valley last year. After necessary renovations to turn the building into suitable office space, 35 staff moved into the building in March this year. According to Leukaemia Foundation of Queensland CEO, Bill Petch, the building represents a great investment for the Foundation now and in the future. The new building will not only provide a great head office for some time to come, but is also a growing asset, he said. The Leukaemia Foundation of Queensland head office will still have the same contact number and mailing address: Leukaemia Foundation of Queensland GPO Box 9954, Brisbane, Queensland 4001.

3 Support now available for Gold Coast patients As part of our commitment to reach more patients and families in need of support, the Leukaemia Foundation of Queensland is now offering fulltime direct support to patients and families living in the Gold Coast region who have been affected by blood cancers. Local resident and registered nurse, Ann Scholz, is the Gold Coast s first dedicated blood cancer Support Services Coordinator. Until recently, the Foundation s Support Services staff have been based only in Brisbane and Townsville. By expanding services and adding a permanent staff member on the Gold Coast, it means more patients will have access to support and information, says Director of Support Services Barbara Hartigan. Although our Brisbane support staff frequently visited Gold Coast hospitals and patients, it s important to establish a full-time presence there to improve the access patients and families have to our services, she said. While we can reach anyone in the state via phone or , face-toface contact is an important part of our support process at the hospital, at their home, or in our office. Support services offered by the Foundation include emotional and financial counselling, workshops, disease information, accommodation, grief services, carer support, and help with practical matters like Centrelink applications. Ms Scholz plans to visit patients in treatment centres all through the region, from Southport to the border. With the new Gold Coast University Hospital, the area is experiencing Ann Scholz - Gold Coast Support Services Coordinator excellent healthcare growth, so we re excited to continue to nurture our relationships with local organisations and healthcare professionals to give patients the best care possible, Ms Hartigan said. The Gold Coast office will also offer information sessions about different types of blood cancers, including presentations from doctors and health professionals. Patients and families living in the Gold Coast region can contact Ann by calling The Reds Beardmen join World s Greatest Shave Thank you to the Queensland Reds players and more than 40,000 people across the state who made the World s Greatest Shave 2014 another fantastic event. The Queensland fundraising tally has reached an amazing $4.5 million thanks to those brave people who shaved and coloured their hair or donated to those who did. Captain James Horwill, James Hanson, Jono Owen and Curtis Browning Known as the Reds Beardmen, Reds player and LFQ Ambassador James Hanson, along with other team members, sacrificed their manly facial fur and hair to raise over $27,000 to help people living with blood cancers and to support vital research projects. Being in a team, it s important to help each other through adversity. So I persuaded a few of my fellow Reds beardmen and long haired chaps to get involved in this great cause, James said. To see more of the amazing people who participated, visit the World s Greatest Shave Facebook page.

4 Thank you for your support Thirty of the Foundation s long-term donors and those who have left a gift in their will were invited for morning tea at ESA Village in recognition of their support and to see first-hand how their donations are making a difference. Guest speakers included Leukaemia Foundation-funded researcher Dr Steven Lane as well as lymphoma patient Tom Bennett and his wife, Elizabeth, from Guyra NSW. The couple is staying at the Foundation s ESA Village while Tom receives treatment. Both speakers shared how the generosity of the Foundation s supporters was making an enormous difference to the areas of research into finding improved treatments and cures, and in supporting and caring for patients when they need it most. Among the guests at the morning tea was Joy de Niet who has generously left a gift in her will to the Foundation in memory of her late husband Arie who passed away from leukaemia in Joy de Niet (middle) with granddaughters Jaime-lee and Kelly Joy was accompanied by her granddaughters Jaime-lee and Kelly. We were so happy to attend the morning tea and see how leaving a gift in my will makes a difference in the areas of research and patient support. I was so touched hearing Tom and Elizabeth s story and glad that the Foundation was there to help them and many others like them, Joy said. A big thank you goes to Sonja Gerdsen from Little Vintage Days who donated her time and beautiful wares to add a special touch to the event. Leukaemia Foundation of Queensland CEO, Bill Petch, said, the morning was a great opportunity to thank some of our valued supporters and assure them that their donations and gifts in will are a valuable source of income allowing the Foundation to expand its services and invest more funds into research. If you would like more information on our Gift in Will program please contact the Leukaemia Foundation s Donor Liaison Officer, Emma Quigley, or equigley@leukaemia.org.au Fit for the cause For those who like to keep fit and fundraise for a great cause, the Leukaemia Foundation has something for everyone in the coming months. The Foundation is thrilled to be the charity partner for the Brisbane Marathon Festival on Sunday 3 August. The event has a number of different distance events including the full 42km marathon. Register at For those who think hiking is more their style, 55 for 5 is an achievable yet challenging hike in the Sunshine Coast Hinterland to be held on August 23 and 24. Visit for more information. DOWNLOAD Would you would like to receive this newsletter or invitations to our seminars via ? Phone

5 Elise honoured with nursing award Elise O Dell-Button, a nurse at the Royal Brisbane and Women s Hospital, is the proud recipient of the inaugural Adem Crosby Haematology Nursing Award. The award was designed to improve the services and care provided to patients being treated in the haematology/oncology setting. It provides an opportunity for a Queensland registered nurse, with a passion for patient care, to undertake approved clinical training or attend a national or international conference. Established in memory of Adem Crosby, the award is jointly supported by Team Adem and the Leukaemia Foundation of Queensland. Prior to his leukaemia relapse and his passing on 4 May 2013, Adem had planned to study nursing to care for haematology patients. Elise said she will use the $5000 award to further her professional development in the field of haematology nursing. In September 2014 she will attend the Haematology Association of Australia conference in Perth. In October 2015 Elise will attend the European Bone Marrow Transplant conference in Istanbul. These conferences are attended by haematology specialists, nurses and other healthcare workers. Attending these conferences will allow me to keep up to date with the latest research and knowledge so I can share this information in a clinical setting and inform my research, Elise said. I also hope to present work at these two conferences and to network with other clinicians and researchers with the hopes of future collaboration. With over five years of clinical experience in haematology and bone marrow transplant nursing, Elise worked most recently in a specialist palliative care service caring for haematology and oncology patients as well as a wider patient group. Elise said she was privileged to have nursed Adem during his Elise O Dell-Button illness and was amazed at how so many patients face their illness with courage and so often desire to help others as Adem did. I am excited to pursue a career that helps patients to achieve the best quality of life possible throughout their treatment journey by focusing on holistic care, Elise said. Elise has also completed a Masters of Advanced Practice on exploring palliative care provisions for relapsed allogeneic stem cell transplant patients. She is now studying a Doctoral of Philosophy at Queensland University of Technology on patient perceptions of and readiness for palliative care following relapse from allogeneic bone marrow transplantation. Competition getting U.G.L.Y.! A band of big-hearted Queensland bartenders will be battling it out in the Leukaemia Foundation of Queensland s U.G.L.Y. Bartender of the Year competition which runs from 26 July to 8 September. U.G.L.Y. stands for Understanding, Generous, Likeable, You and is a fundraising competition run statewide in pubs, hotels, sporting clubs and RSLs with proceeds benefiting patients and their families living with leukaemia, lymphoma, myeloma and related blood disorders. Leukaemia Foundation of Queensland CEO, Bill Petch, said the U.G.L.Y. Bartender of the Year was a great opportunity for community-minded bartenders to host a fun event and in the process raise funds and awareness for a serious cause. The fun and relaxed atmosphere enjoyed at pubs and clubs creates an ideal environment for fundraising and even more so when you add a vivacious bartender with a heart of gold to the mix, Mr Petch said. To find out more about local U.G.L.Y. events you can support in your area visit or phone

6 What s on The following educational seminars and support groups are open to all patients, carers and family members, and will be held at the Leukaemia Foundation s ESA Village, Dutton Park (unless indicated otherwise). For more information or to make a booking phone JULY MON 14 WED 16 WED 30 AUGUST THU 7 SAT 9 TUE 19 Treatment of MDS: What s on the horizon Guest speaker: Dr Steven Lane Date & time: Monday 14 July 11.30am Up-to-date perspective on CML Guest speaker: Date & time: Dr Tony Mills Wednesday 16 July 11.30am Lymphoma/ Myeloma/ Amyloidosis: Autologous Transplants Guest speaker: Catherine Kirk Date & time: Wednesday 30 July 11.30am Nuts and Bolts of allogeneic transplants Guest speaker: Dr James Morton Date & time: Thursday 7 August 2pm MPN: Coffee, cake and chat Date & time: Saturday 9 August 11.30am Amyloidosis: What is kidney disease and what does Kidney Health Australia do? Guest speaker: Date & time: Matty Hempstalk Tuesday 19 August 11.30am SAT 23 CML: Coffee, cake and chat Date & time: Saturday 23 August 2-4pm THU 28 Caring for the Carer: The Role of the Carer Date & time: Thursday 28 August 10am SEPTEMBER THU 4 Caring for the Carer: Burnout, how do I recognise it and how do I deal with it? Date & time: Thursday 4 September 10am SAT 6 It s all about me! Getting the best out of my life Date & time: Saturday 6 September 9am THU 11 Caring for the Carer: Music Therapy, how does it help heal and relieve tension? Date & time: Thursday 11 September 10am SAT 13 It s all about me! Taking control of my life Date & time: Saturday 13 September 9am TUE 16 World Lymphoma Awareness Day Guest speaker: Date & time: Dr Jason Butler and Louise Underhill Tuesday 16 September 11.30am THU 18 Caring for the Carer: Strategies for coping Date & time: Thursday 18 September 10am SAT 20 Living well with Grief brunch Date & time: Saturday 20 September 9am WED 24 Look good feel better Date & time: Wednesday 24 September 10am THU 25 Breaking down MPN Date & time: Thursday 25 September 11.30am Changes to our privacy policy The government has made some changes to the Privacy Act and Australian Privacy Principles which govern the way organisations and companies inform you about how your personal information is used and handled. The Leukaemia Foundation recognises that your privacy is important and we are committed to protecting the personal information we collect from you. As such the Foundation has an updated privacy policy. The new policy can be found on our website leukaemiaqld.org.au/privacy or please call for a copy St Pauls Terrace Fortitude Valley Qld leukaemiaqld.org.au