Annual Report 2014

“Your help is our hope”

Annual Report 2014

“Your help is our hope

“Your help is our hope”

Excerpts from this publication may be reproduced, with appropriate acknowledgement, as permitted by the Copyright Act. Published June 2015 Printed by Tadpac +61 6272 5000 ISSN 1838-823X

The David Collins Leukaemia Foundation of Tasmania Inc.

is a Tasmanian organisation dedicated solely to the care and cure of Tasmanians

living with leukaemia, lymphoma and related blood disorders.

All money raised stays in Tasmania.

Contents 2 ........................... 2014 Office Bearers

3 ........................... President’s Report

5 ........................... Thirty Four Years of Achievements

8 ........................... Research Reports

11 ......................... Professional Development Awards

14 ......................... Audit Report

15 ......................... Financial Reports

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2014 Office Bearers

Patron: The Governor His Excellency The Late

Honourable Peter Underwood AC President: Mrs D Tuck

Vice President: Prof G Woods

Secretary: Mrs A Ogilvie

Treasurer:

Executive Officer: Mr G Petterd

Committee:

Mr D Asten, Mrs A Piaszczyk, Mr N Deane, Mr R Heuke, Dr K Marsden, Ms K Dun, Mrs C Willis, Ms S. Woods (until Nov 2014). Life Members:

Dr M Baikie, Mrs J Balon, Mrs B Collins, Mr N Deane.

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President’s Report The Foundation continues to provide support to the Tasmanian community in the areas of patient support, professional development awards for those who work within the hospital environment, equipment for hospitals and continuing support for research. DCLFT, in consultation with hospital professionals, has continued to provide one off financial support to families in meeting the financial commitments associated with their illness which amounted to $5,500. During 2014, the Foundation presented four Professional Development Awards state wide to the value of $6,452. These awards enabled scientists and nurses to attend national and international conferences and courses not currently available in Tasmania. Our research commitment continued during 2014, with $47,000 being allocated to research at Menzies Research Institute/University of Tasmania. The Foundation has been supporting the recipient Assoc. Prof Adele Holloway for several years. Adele has been working on a project investigating the origins of leukaemia development. Our Annual Dinner was held at the end of June at the Lindisfarne Rowing Club was again a great success both financially and in renewing friendships. The theme for the dinner was Ausmas, with traditional Christmas dinner culminating in a visit from Mother Christmas. Our Annual Button Day raised $15,128 state-wide. We would like to thank our long-term supporters and button sellers, along with high school and college students for their assistance. The Foundation continued to support in part the position of Haematology Cancer Care Coordinator at RHH. It is our hope that by partially supporting the role in the short term, it will ultimately be fully funded by RHH on an ongoing basis. Our major project for 2014 was the upgrading and renovation of David Collins House situated in Risdon – very close to Hobart. This unit has been used for almost 30 years to house intrastate patients and their families whilst undergoing treatment in Hobart. The project was coordinated by Tim Penny, architect, Bennett Construction, Graeme Petterd, Executive Officer DCLFT and

It is with pleasure and a great deal of pride that I present the President’s Report for 2014

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committee member Catherine Willis. Without their dedication to detail and amazing efforts this project would not have been completed to such a high standard. In fact it has exceeded our expectations. In November, Professor Ray Lowenthal AO, a long-time supporter of DCLFT, officially reopened David Collins House in the presence of supporters from around the state. A decision was made by the Committee to rebrand the Foundation, culminating in the new logo including a bright red blood droplet. All of our leaflets, collection boxes and stationary have been updated accordingly. We were saddened at the sudden death of our Patron, His Excellency, the Governor Peter Underwood. He and his wife had been very welcoming when they hosted a celebration at Government House to acknowledge the Foundation’s 30th Anniversary. We are grateful that Her Excellency Professor The Honourable Kate Warner AM Governor of Tasmania has accepted the role of our new Patron. An anonymous benefactor has donated a large sum of money to support a PhD student in the study of blood related illnesses. DCLFT and the University of Tasmania Foundation are working together to ensure that an appropriate recipient is selected. Finally I wish to thank the Executive Officer, Graeme Petterd and DCLFT Committee members for their continued commitment in assisting me in ensuring that the Foundation is financially sound whilst supporting patients in Tasmania with leukaemia and other blood diseases. Thank You Deirdre Tuck

President, David Collins Leukaemia Foundation of Tasmania

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Thirty Four Years of Achievements 1980 - 2014

Yearly Achievements 1980 Incorporated 1981 Presented research grant of $12,128 and first button day

raised $1,466 1982 Research grants totalled $30,000 and $5,000 to oncology

services 1983 Fundraising target of $80,000 and achieved $90,348 1984 Formation of North West Group 1985 Purchased David Collins House 1986 Car donated by Mr R Baker raffle raised $23,000 1987 Publication of “Kristy’s Book” 1988 First statewide Button Day 1989 Roger Scott’s “Walk for Life” raised $12,978 1990 Progressive fundraising exceeded $1,000,000 1991 Committed $10,000 to establish Tasmania Bone Marrow

Registry 1992 Formation of Northern Group based in Launceston 1993 Northern Group raised $5,827 1994 Bi-Annual statewide meetings introduced 1995 Research grants > $60,000 plus $12,000 to Bone Marrow

Registry 1996 Progressive fundraising exceeded $1,600,000 1997 Established “Special Purpose Investment Fund” of

$502,959 1998 $10,000 in equipment presented to the Royal Hobart

Hospital 1999 North West Group raised a record of $9,500 for the year

For each of its 34 years the Foundation has had significant achievements.

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2000 Research grants exceeded $95,000 and became affiliated with the Cancer Council of Tasmania

2001 $11,500 refurbishment of David Collins’ House 2002 Tom Goninon walked from Wynyard to Hobart to raise

$23,000 in memory of his grandson 2003 Joint DCLF/LFA $8,000 grant to fund Tasmanian Bone

Marrow Transplant Support Group 2004 Professional Development Awards for Health Care Workers 2005 Appointment of first employee as part time Executive Officer 2006 Beverley Collins, Norm Deane and Dr Margaret Baikie -

Life Members 2007 Comalco sponsored refurbishment of bathroom at David

Collins’ House 2008 Income from investments and other fundraising totalled

$106,621 2009 Purchased equipment valued at $44,000 for hospitals

throughout Tasmania and progressive fundraising exceeded $3,000,000

2010 Reception at Government House to celebrate 30 years and entered partnership with Ponting Foundation

2011 Increased “Special Purpose Fund” to $750,000 State amount of $22,067 collected on Button Day highest ever Committed $80,000 for redevelopment of Oncology Day Centre at St John’s Calvary Healthcare to be named “David Collins Suite”

2012 $21,075 for three treatment chairs Outpatients Oncology RHH The Blessing & Opening by Archbishop Doyle AM DD of the David Collins Suite Oncology Day Centre, St John’s Calvary Health Care Tasmania

2013 Joan Balon presented with Life Membership Provided Accuvein hand held vein illumination systems to St John’s, RHH, LGH & NW Regional Hospitals Oncology Wards; $7,000 each Provided $22,000 for 3 x Treatment Chairs to new Oncology Outpatients Unit, RHH Granted $45,000 for leukaemia research

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Financed Haematology Cancer Care Coordinator at the RHH

2014 $92,000 expenditure for major renovations to David Collins House Purchased dining table and chairs for new Cancer Support Centre RHH Agreed to support Haematology Cancer Support Coordinator for a further two years at RHH $30,000 towards leukaemia research at the University of Tasmania

Our Patrons 1980 - 1994 Sir Donald Trescowthick 1995 - 2004 Dr Margaret Baikie 2005 - 2014 The Governors of Tasmania Statewide Button Days 1981-2014 - $393,943 Research Grants 1981 - 2014 - $1,868,247 Professional Development Awards 2004 - 2014 - $67,001 David Collins House Accommodation (Days of Occupancy) 2010 2011 2012 2013 2014 111 332 256 267 69 (120 days

closed for renovation)

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Research Reports

This project aims to further validate specific genes and genetic variation as a predisposition for why people develop CLL. Whole genome sequence of a CLL genome from a patient with familial CLL was undertaken. This identified one germline mutation and potentially, eight acquired mutations in eight genes in the CLL cells. The next step was to assess the mutational status of these nine genes in other CLL genomes to determine if these genes play a significant role in the pathogenesis of CLL. Six newly identified genes reported in the literature as being mutated in CLL were also sequenced. Total of 15 genes. There were no mutations identified in five of genes and a total of 24 mutations in the remaining 10 genes. One of the benefits of this project was a collaboration that was formed with Prof Peter Campbell from the Wellcome Trust Sanger Institute in Cambridge, UK. Prof Campbell is coordinating a world-wide research projects that are performing massively paralleled sequencing of the common cancer genomes. I applied to Prof Campbell and was accepted to join him in Cambridge for a month. Prof Campbell is a New Zealand/Australian trained Haematologist. This was an enormous opportunity for myself to gain professional mentoring from one of the leading research groups in the world. This is all thanks to the on-going support that I have received from the David Collins Leukaemia Foundation of Tasmania. Based on the emerging literature of cancer genome sequencing in haematological malignancies it appears that for each type of haematological malignancy there are a handful of genes that are commonly mutated and then there are hundreds of genes that are mutated in one or two cases. Each genome only has on average 5-8 genes mutated. However given the pattern of mutations it will be a while before all the implications of the possible combinations of mutations will be known. This certainly fits with the low mutation rate seen in the genes I am interested in.

Elizabeth Tegg: Validation of newly identified genes in the

pathogenesis of chronic lymphocytic leukaemia

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Academic output:

Publications: LC Fox, SJ Ragg, RM Lowenthal, EM Tegg and A. Johnston . Use of ‘Rainy Day’ autologous haematopoietic stem cells: a single institution experience over 10 years. Internal Medicine Journal. 2014:44(9):897-902. RM Lowenthal, EM Tegg and JL Dickinson. The Familial Tasmanian Haematological Malignancies Study (FaTHMS) : Its origins, its history and the phenomenon of anticipation. Transfusion and Apheresis Science. 2013:49(2);113-115.

EM Tegg and E Raik. The importance of the quality of the bone marrow sample for successful cytogenetic culture. International Journal of Laboratory Haematology. 2013:35(2);e1-e3. Conference presentations: Royal College of Pathologists of Australasia Update, 2013. A retrospective study to assess whether there is a predictive relationship between the Sysmex XE5000 NEUT-X research parameter and the myeloid lineage dysplasia. T Kidd and EM Tegg. (poster) Royal College of Pathologists of Australasia Update, 2013. Correlation of the immunophenotype, especially HLA-Dr expression in the different subtypes of AML. A Thalalvasal and EM Tegg (poster) A novel duplication of 4q13.2, and a possible association with chronic lymphocytic leukaemia. EM Tegg. HAA (Haematology Society of Australia and New Zealand, Australia and New Zealand Society for Blood Transfusion & Australasian Society for Thrombosis and Homeostasis) 2012 (Keynote presentation). The importance of the quality of the bone marrow sample for successful cytogenetic culture. EM Tegg and E Raik. Laboratory Medicine 2012 (Poster presentation). The importance of the quality of the bone marrow sample for successful cytogenetic culture. EM Tegg and E Raik. American Society of Human Genetics (Poster presentation).

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Integrins are molecules found on the surface of cells. They are important for their growth and development. We propose that RUNX1, a master regulator, which is often disrupted in leukaemia controls when and how integrins appear on the surface of cells. Changes to the integrins found on the surface of cells in which RUNX1 is disrupted, is likely to lead to altered growth, maturation and release of the cells from the bone marrow, contributing to the development of leukaemia. The overall objective of this study is to determine whether genes encoding integrin family members ITGB4 and ITGB5 are directly regulated by RUNX1 and to investigate the effect of their altered expression on haemopoietic cell biology. Aberrant forms of the RUNX1 master regulator are often found in leukaemic cells. Understanding how these altered forms of RUNX1 affect cells is essential to understand how leukemia develops and progresses. This study has shown that two surface molecules, the integrins ITGB4 and ITGB5, are controlled by RUNX1. In addition we have now found that many other integrins are also potentially controlled by RUNX1. Integrins are proposed to play an important role in blood cell development, and changes to when and where they are found on the surface of blood cells is likely to contribute to the development and progression of leukaemia. Academic output: Regulation of integrin gene expression programs by RUNX1 in leukaemia, JL Phillips, JL Dickinson, AF Holloway, 35th Annual Lorne Genome Conference 2014, Lorne Victoria. Regulation of integrins by RUNX1 in leukaemia, JL Phillips, JL Dickinson, AF Holloway, ACT2014, The 13th Asian Conference on Transcription, Melbourne, Victoria

Adele Holloway: Regulation of integrins by RUNX1 in leukaemia

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Professional Development Awards

The congress of European Haematology Association (EHA) is one of the world’s most important annual scientific meetings in haematology. The 19th Congress of EHA I attended was a very enriching and valuable experience. The congress presented many novel updates and useful information in haematology covering different themes in both clinical and biology sessions. Two different fields which I found very interesting were: 1. Findings about pre-leukaemic stem cells (e.g. human trials showed that despite identification of pre-leukaemic mutations within stem cells, the subjects did not develop leukaemia for years). 2. Studies about new targets in AML treatment including components which target epigenetic processes. Various new epigenetic biomarkers and molecules responsible for AML development were discussed. This year, there was a dual poster area with traditional paper poster and e-posters. My abstract had been accepted for both traditional and e-poster sessions. I presented my abstract entitled, “Arsenic trioxide and fucoidan synergize to induce apoptosis in acute promyelocytic leukaemia” There were some questions, which ranged from the biological mechanisms point of view to the future direction of my research. The conference provided many scientific, educational as well as personal highlights for me. I was able to achieve my objectives as I gained valuable experiences with exposure to such a great international forum with groundbreaking research and interaction with leaders in the field of haematology research. I had useful discussion with key researchers in AML field and made a few useful contacts along the way. More importantly, my research was published in an international standing publication and also critically reviewed by a good panel of international scientists. This will provide the motivation for taking this research into the next phase and increase my confidence that the outcome of the research is heading in a positive direction.

Farzaneh Atashrazm: European Haematology Association

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Key presentations and knowledge gained. Overview of Primary Immunodeficiency Disorders and the application of flow cytometry to diagnose and monitor post-transplant cases: Since the discovery of Adenosine deaminase deficiency in the 1970’s there has been tremendous advances in the understanding of severe combined immunodeficiency (SCID). This talk stressed the power of flow cytometry as a key laboratory tool for clinical immunologists to rapidly diagnosis PIDDs by evaluation of proteins of interest in cellular compartments Distinguishing Normal and Abnormal T-Cells: Overview of T-Cells and NK cells, highlighting the features useful in the distinction of normal versus abnormal. T-Cell VBeta Assay: VBeta assay is a useful tool in the evaluation and identification of monoclonal T cell populations by flow cytometry. This talk discussed the structure of T cells and the use of the V Beta assay in the evaluation of T cell populations. Standardized Platelet and Reticulated Platelet Counting: While there is a standardised reference method for platelet enumeration by flow cytometry, there is no such method for reticulated, or the immature form of, platelets. This talk discussed the use of Thiazole Orange, along with a novel gating strategy to get accurate and consistent results.

Standardizing Microparticle Assays: Microparticles are any particle in the blood less than 1um in diameter. Whilst there are several methods to detect and monitor these particles, flow cytometry has the advantage of being readily available and allows the assessment of multiple parameters. This talk discussed the practicalities of how to find and assess microparticles in your laboratory

Susan Wright: International Clinical Cytometry Society

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Nurses need to be creative and realise the potential for complementary interventions such as massage to assist with improving quality of life, symptom management, self esteem, comfort, confidence, dignity and peace for patients with haematological cancers, and in fact anyone with a serious illness. Oncology Massage is a specialised form of remedial massage to assist with symptom management by skilfully applied massage techniques. Oncology Training Module 1 consisted of 6 units of study over 3 full days. 6 practitioners from Victoria, New Zealand and Tasmania participated in the course. I was the only medical professional amongst the group, with the others having vast experience in various massage modalities. Module 1 consisted of: Unit 1 – Introduction, opening your heart to cancer, understanding how cancer develops and spreads around the body. Unit 2 – Pressure, site, position adjustments for patients undergoing chemotherapy – practical and theory. Unit 3 – Understanding fascia, relaxation reflex, pressure, site, position for patients undergoing radiation or surgery. Unit 4 – Bone Marrow Support practical, pressure, site, position for patients with appliances, scar tissue or bone metastases. Unit 5/6 – A full day of safe massage for patients with lymph nodes removed. Practical and theory. Taking oncology massage into your clinic, hospital and community. The massage techniques I learnt are elegant in their simplicity but challenging to perform, requiring to be constantly mindful and to resist drifting into habitual patterns of massage. It is gentle and relaxing that accounts for complexities of cancer treatment. Chemotherapy cycles, radiation oncology and surgery can leave patients experiencing a mixture of physical and psychological side effects and knowing how to modify a massage session is a basic requirement if working with cancer patients. As an oncology massage therapist I need to understand the disease process and know what questions to ask to make sure that the massage is safe and effective for those with a history or diagnosis of cancer.

Suzy Fenton: Oncology Massage Module

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Audit Report

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Financial Reports

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The Foundation expresses its

SINCERE APPRECIATION

To all Donors of money, effort and time during the year.

Donations of $2 or more are TAX DEDUCTIBLE

For further information please contact: David Collins Leukaemia Foundation of Tasmania PO Box 372 Hobart Tasmania 7001 Telephone: +61 1300 728 533 Website: http://www.leukaemia-tasmania.com.au