FEBRUARY 2014 | ISSUE ONE
CARER Going bald is a small price to pay Gold Coast mother, Kira Went, will go bald for the seventh year in a row during World’s Greatest Shave 2014 held from 1316 March. Kira said her hair was a small price to pay for having a healthy, happy eight-year-old. Kira’s daughter, Charli, was diagnosed with acute lymphoblastic leukaemia (ALL) just before her second birthday in 2007. In March 2008 Kira decided to participate in her first World’s Greatest Shave. “I know that Charli would not be here if it were not for research funded by organisations like the Leukaemia Foundation,” Kira said. “The Foundation also provided financial assistance when we had a car accident during Charli’s treatment, as well as emotional support.” Charli’s diagnosis became even more serious when her ALL turned into mixedlineage leukaemia (MLL), requiring her to have a stem cell transplant. “Charli has been leukaemia-free for six years and I look at her now, healthy and full of life, and it all seems like a bad dream.” Kira said she is happy to keep losing her locks and raising funds for other people living with blood cancers. “I’d like to encourage everyone to participate in World’s Greatest Shave. Even if you don’t shave, you can colour your hair or make a donation.” To register visit worldsgreatestshave.com or find out more on page 2.
Kira and Charli Went
Message from the Chief Executive Officer For the Leukaemia Foundation of Queensland, this year will be one of expansion, change and innovation with the sole aim of ensuring the best possible outcomes for people whose lives have been affected by blood cancers. We are dedicated to expanding our range of support services to deliver the assistance patients and families need when they need it most. We are also committed to increasing research funding each year with the aim of discovering the best treatments and cures. We can’t do this without your help! This year will see the implementation of a comprehensive five-year strategic plan which has been developed through extensive consultation with the Board and management team. The strategic plan gives direction to key areas of the business to ensure that we continue to grow, thrive and
deliver our core services. The five key areas we are focusing on are support services, research, fundraising, awareness and people. I would like to thank the Board, staff, branch members and volunteers for their ongoing commitment to improving the lives of people with blood cancers. Most importantly, we would not have the resources to do this vital work without the generosity of our corporate and individual supporters like you who donate funds, leave gifts in wills or take part in our fundraising events. Thank you for your continued support!
Not too late to sign up for World’s Greatest Shave Now is the time to jump on board and join the fun as thousands of brave Queenslanders register to go bald and help blood cancer patients during World’s Greatest Shave 2014. World’s Greatest Shave will be held from 13 to 16 March with the Leukaemia Foundation of Queensland aiming to raise
$5 million to fund patient care and medical research. If you are hesitant about losing your own hair you can colour your hair or simply give a donation to a friend, family member or colleague who is taking the big step. Sign up now, find out more information or make a donation at worldsgreatestshave.com or call 1800 500 088.
Bill Petch - CEO Leukaemia Foundation of Queensland
To read about the Foundation’s achievements over the past year the 2012/2013 Annual report is available on our website at leukaemiaqld.org.au In closing, one of our Life Members, Joyce Bylett, sadly passed away recently. Joyce worked tirelessly for more than thirty years beside her late husband Fred Bylett, the Foundation’s first vice president.
Foundation offers free exercise program The Leukaemia Foundation of Queensland has partnered with Aspire Fitness and Rehabilitation (AFR) to offer a FREE exercise program for people living with blood cancer. The Foundation has introduced the new program in response to growing evidence of the benefits of physical activity for people living with leukaemias, lymphomas, myeloma and related blood disorders. AFR is a centre for delivery of late stage rehabilitation, strength and conditioning programming, and medically specific rehabilitation services. The Foundation and AFR have consulted with allied health professionals and blood cancer specialists to develop the program which will be conducted by the accredited exercise physiology team at AFR’s Woolloongabba facility in Brisbane.
According to Leukaemia Foundation Support Services Coordinator, Maryanne Skarparis, the new program has been developed with three groups in mind, although anyone affected by a blood cancer who thinks the program would benefit them is encouraged to participate. “The program mainly targets people who have been recently diagnosed and are about to start treatment, people who are about to have a stem cell transplant, or those having ongoing treatment who are looking to improve their functional ability,” Maryanne said. “The 12-week program is individually tailored to your health
needs and exercise capacity. There will be six people in each program, although each participant will have an individualised exercise program which consists of exercises you can do during the group session and at home.” To register or find out more information please phone 07 3055 8233 or email Support Services Coordinators Maryanne Skarparis at email@example.com or Michele Leis at firstname.lastname@example.org
A will gives you peace of mind Whether you have few possessions or many, a will is the only way you can confidently ensure that your affairs will be handled in the way you wish them to be. It can also be an important way to support the causes you are passionate about. Your will should be reviewed regularly to reflect your current wishes and when life changes occur such as:
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marriage separation or divorce entering a de facto relationship the birth of a child or grandchild a change to your financial circumstances the passing of a spouse or partner a change to a beneficiary retirement
A will also provides you with the opportunity to name guardians for your children, ensure preservation of assets, and give money to causes you would like to support.
After ensuring that your loved ones are taken care of, a gift in your will to the Leukaemia Foundation of Queensland is a simple but powerful way of ensuring that our important work continues into the future, without impacting on your lifestyle today. You do not have to be elderly to start thinking about a gift in your will. Many younger people support a cause they feel passionately about when they create or review their will. To find out how to write and lawfully lodge a will, you can obtain independent legal advice from a solicitor, or the Public Trustee offers a free will making service. Find out
more at www.pt.qld.gov.au/wills or call 1300 360 044. If you would like confidential assistance regarding establishing a gift in your will to the Foundation or you would like a copy of our Gift in Will booklet posted to you, please contact our Donor Liaison Officer Emma Quigley on 07 3318 4459 or 0407 176 487 or email email@example.com
New drug for leukaemia patients Preliminary findings of a world-first Phase I trial in Melbourne for a new compound are showing great promise for people with the most common form of leukaemia. In the ABT-199 clinical trial, people with chronic lymphocytic leukaemia (CLL) who had an extremely poor prognosis achieved an 84% response rate and the bone marrow cancer was cleared in 23% of people.
ABT-199 which will be given as a tablet once a day.
The trial follows work by researchers at the Peter MacCallum Cancer Centre, The Royal Melbourne Hospital and the Walter and Eliza Hall Institute. The research team discovered how to ‘switch off’ cancer cells, and some of the early laboratory development of the therapy was funded through the Leukaemia Foundation’s National Research Program in 2012.
“If the safety profile of ABT-199 supports further study, we anticipate that ABT-199 could be available for a larger Phase II clinical trial to determine whether it is effective for treating CLL in the next one to two years.”
Professor Andrew Roberts, head of clinical translation at the Walter and Eliza Hall Institute, said the Phase I clinical trial was designed to demonstrate the safest dose of
“It was tested in a small group of patients with CLL who had not responded satisfactorily to other treatments,” Professor Roberts said.
Leukaemia Foundation of Queensland CEO, Bill Petch, said the trial findings for ABT-199 were good news for people with CLL, particularly those who have run out of treatment options. “This drug means people now have hope to end this life-long cycle of
Professor Andrew Roberts, head of clinical translation at the Walter and Eliza Hall Institute.
intensive treatment, remission and relapse,” Mr Petch said. “Where possible, the Foundation encourages treating centres to give Australians access to clinical trials and potentially life-saving and lifeenhancing treatments.” “Given the drug may not be available for another five to 10 years on the Pharmaceutical Benefits Scheme, the Foundation supports ongoing conversations within the Federal Government about the introduction of a fast-track program to give people quicker access to cancer therapies.”
Spreading Christmas cheer One hundred Christmas hampers were delivered to families staying at the Leukaemia Foundation of Queensland accommodation and support centres in Brisbane and Townsville in December. The hampers were overflowing with sweet and savoury goodies and vouchers to help make Christmas a little brighter for families whose loved ones were going through blood cancer treatment. Thank you to Chris’ Supa IGA at Carina in Brisbane for donating the hamper food at cost price and for the generous donation of $2,000.
Foundation President, Beverley Mirolo, accepted a $2,000 cheque from Nick Nicolaou and Cath Blanch from Chris’ Super IGA at Carina in Brisbane.
Our commitment to research continues with your help Three promising new research projects have been selected for funding by the Leukaemia Foundation of Queensland in 2014. Through our National Research Program, the Foundation is committed to funding innovative research into the causes, diagnosis and treatment of leukaemias, lymphomas, myeloma and related blood disorders.
Identifying the cells and pathways that contribute to chronic GVHD
Katie Eireann Lineburg PhD Scholarship QIMR Berghofer Medical Research Institute The major complication of bone marrow transplantation occurs when the donated cells recognise the recipient’s own cells as foreign and start to attack and kill them. The result is graft-versus-host disease (GVHD), a condition that targets the skin, gastrointestinal tract and liver. GVHD occurs in the majority (50-70%) of stem cell transplant recipients. Understanding which cells are involved in driving GVHD and how these change our immune system is critical for reducing GVHD and developing better treatments.
Treating blood cancers by activating and boosting the immune system response to cancer
Dr Stephen Mattarollo Research Fellow The University of Queensland Diamantina Institute The immune system is capable of controlling blood cancer but requires manipulation by immunotherapy to be effective. A vaccine has recently been developed which can inhibit the growth of lymphomas in mice by promoting the immune stimulatory properties of Natural Killer T cells. This study will investigate the potential benefits of combining this novel vaccine approach with antibodies that can boost the activity of the immune system and help it better target and kill lymphoma cancers.
Dr Steven Lane
New ways to optimise stem cell transplantation
Dr Steven Lane Grant-in-aid QIMR Berghofer Medical Research Institute Stem cell transplantation is the most effective treatment to prevent relapse in blood cancer patients. Unfortunately, some patients cannot collect enough cells to have a transplant. We have discovered a new pathway that is important in stem cell mobilisation and will work to understand this pathway and work out the best way to give this new treatment to patients with blood cancers.
Trusts and Foundations a vital part of our work The Leukaemia Foundation would like to thank the following Trusts and Foundations which have awarded grants in 2013, and helped us continue to give patients and their families support when they need it most. Sylvia and Charles Viertel Charitable Foundation ($100,000) To fund the Survivorship Program, an extension of our support programs which will help to meet the needs of long term blood cancer survivors as they face the physical and emotional challenges that can occur following the completion of their treatment.
Gambling Community Benefit Fund ($34,990) Towards the purchase of a maintenance work vehicle for our Brisbane accommodation villages.
Brisbane Advertising Association ($7,000) Towards the purchase of digital TV’s at Clem Jones – Sunland Leukaemia Foundation Village.
Google Grants ($10,000 in kind) Adwords account - to improve website visability.
Queensland Community Foundation ($2,000) Young Philanthropist of the Year – Adem Crosby.
The Cory Charitable Foundation ($7,500) Towards expanding the air conditioning system in the education room at ESA Village at Dutton Park.
The William Angliss Charitable Fund ($1,500) Towards the running of the Bereaved Parents’ Weekend for those who have lost a child of any age through blood cancers.
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 07 3055 8233. MARCH THU 6
Caring for the Carer: Strategies for coping Date & time:
Thursday 6 March 10am
Lymphoma: Spotlight on Hodgkin lymphoma – understanding your diagnosis and treatment. Guest speaker: Dr Cameron Curley Date & time: Wednesday 19 March 11.30am
It’s all about me – getting the best out of my life (all patients/carers welcome) Date & time: Saturday 22 March 9am
It’s all about me – taking control of my life (all patients/carers welcome) Date & time: Saturday 29 March 9am
APRIL WED 30
Lymphoma (Waldenstroms): Understanding your blood results Guest speaker: Dr Jason Butler Date & time: Wednesday 30 April 11am
You can help DOORKNOCK APPEAL
Please join our doorknock team 14-27 June Help us reach our fundraising target of $1 million this June by collecting donations in your street. For an hour or two out of your day you can help the Foundation to continue to fight blood cancer and provide assistance to people currently receiving treatment. To register or find out more please call 1800 152 211.
MAY SAT 3
Living well with grief brunch Date & time:
Caring for the Carer: The role of the carer Date & time:
Thursday 8 May 10am
MPN: Coffee, cake and chat Date & time:
Saturday 3 May 9am
Saturday 10 May 11.30am – 2.30pm
Caring for the Carer: Burnout, how do I recognise it and how do I deal with it? Date & time:
Thursday 15 May 10am
Amyloidosis: How it affects the heart Guest speaker: Dr Dariusz Korczyk Date & time: Tuesday 20 May 11.30am
Myeloma: National Myeloma Day Guest speaker: Dr Peter Mollee Date & time: Wednesday 21 May 11.30am
Caring for the Carer: Music therapy, how does this method help relieve tension? Date & time:
Thursday 22 May 10am
Chronic Myeloid Leukaemia: Coffee, cake & chat Date & time:
Saturday 24 May 2-4pm, venue TBA
Look Good Feel Better Date & time: Wednesday 28 May 10am
Caring for the Carer: Strategies for coping Date & time: Thursday 29 May 10am
Level 13, 300 Adelaide Street, Brisbane Qld 4000 1800 620 420 leukaemiaqld.org.au