Five years of fight Annual Report 2019/2020 1 On February 24, 2015, we lost Maddie Riewoldt. A promise was made. Her fight would become a loud voice and a vision. Bone Marrow Failure Syndromes affect young Australian lives. We must find a cure. Maddie Riewoldt’s Vision Annual Report 2019/2020 2 3 Contents 1. Introduction 4 Tasmanian news and events 62 Community news 2019/2020 65 Chairman’s report 6 Acknowledgements and thank you 68 A message from our CEO 8 Major donors over five years 69 Our legacy 9 Our patron and ambassadors 70 Our vision, mission and commitment 10 Advisors and committees 72 Our strategic priorities 11 Our first five years 12 Volunteers 76 2. Research 28 4. Governance 88 A message from our Director 31 Structure and management 91 A trajectory of exceptional progress 32 Organisational governance and structure 92 Funding innovative scientific research 33 Our people 94 Exceptional achievements and outputs 36 Reflections from Board Alumni 96 Research at a glance 37 Five pillars of research 38 Financial report 101 Centre of Research Excellence (CRE) Auditor’s financial report 109 For over 26 years, Carman’s Kitchen has been committed to creating Schematic Structure 39 delicious breakfast and snacking products, made right here in Australia from the Our projects 41 most wholesome ingredients. Founded by Carolyn Creswell, then an 18 year old 5. Looking to The Future 128 university student, the brand has evolved into Australia’s number one nutritious Scientific Advisory Committee (SAC) 42 snacking brand, but remains true to its core purpose – making real food, with real passion. In early 2018, Carman’s moved into their new office space in Huntingdale, Victoria. Inaugural National Symposium on Final note 131 With this move came the opportunity for Carman’s to support the fantastic work Bone Marrow Failure Syndromes 44 of Maddie Riewoldt’s Vision through providing the team office space How you can help 132 for what is now become our forever home. Having MRV and the team in the Evolution of our Clinical Trial Programs 47 office is a true honor as we get to witness them reach some truly amazing Contact 137 milestones in finding a treatment for bone marrow failure. Our services—telehealth nurse 48 3. Fundraising 50 Maddie’s Vision Hand Sanitiser 52 Major events 53 Other community fundraisers 2019/2020 61 Maddie Riewoldt’s Vision Annual Report 2019/2020 4 5 1. Introduction Maddie Riewoldt’s Vision Annual Report 2019/2020 6 7 Chairman’s report with Nicholas Riewoldt Family, community and impact. activities of our organisation. We have obligations to you, our Victorian State Government provided us with a commitment of donors and to the governing bodies, that allow us to run as a $2.1million in 2018, followed by a Federal Government injection of It is five years since Maddie Riewoldt’s Vision was founded in June charity. More than this, however, we have obligations to the $1million, the possibilities truly became more definitive. Forming 2015. This milestone is significant not only to our family and the community of people affected by Bone Marrow Failure. Our real the Centre of Research Excellence to dissect and understand legacy we have created for Maddie; it also marks a time to pause measurement is within the context of making a difference to the Bone Marrow Biology was a national (and international) first of and to reflect on the impact we are having on all people whose lives of families and patients who, just like Maddie, have the fight its kind and has underpinned our ability to drill more intently lives are devastated by Bone Marrow Failure. We are proud to be of their lives ahead. I meet families and patients who thank us for into the most cutting-edge areas of research and be where an organisation with a strong family connection, supported by the attention we have given this area of unmet need. They express we are today. Importantly, the community funds that have a passionate Australian community. I know you will agree after this in gratitude for the development of new technology for been contributed to maintain a cash flow have enabled us to reading this Annual Report that we are achieving a significant, better diagnosis, that their child goes from on-going, emergency continue to provide research grants, which is our lifeblood. We life-changing impact. Together with you, we have raised $9.6 hospitalisations, to getting back to school and that new clinical are indebted to Snowdome Foundation in our formative years million since we started and immediately propelled these funds trials funded by Government, provide people with another for the governance framework and guidance they provided. To towards forming a Centre of Research Excellence and 24 medical chance. A chance that Maddie did not have. In 2015 we set about the founders and the board, our family is so appreciative of the research projects. deliberately ensuring we were nationally and internationally confidence you provided us with and the ongoing collaboration relevant. We could not do this alone and collaborating with we have maintained with the Bloody Good Dinner and co-funded passionate, committed organisations and researchers is key. In research endeavours. Where are we in our aim to change lives? 2019-20, we have successfully reached a milestone and an impact that is achieving this. Next year, we will participate in our first 2019–20 has been a year like no other in Australia and the world. I describe the formation of our Centre of Research Excellence International Clinical Trial and if restrictions lift, we hope to send We remain filled with deep gratitude for your ongoing support as a turning point in our ability to support all our research our co-funded, Victorian Cancer Agency (VCA) fellow to America of the Vision we have of the future, but also for helping us to projects and create a path to a cure. The State Government to work. It is all of these elements of the strategic journey we weather the stormy uncertainty that the Covid-19 virus has funding created the ‘cement’ that now binds our building blocks. are on, that translate into meeting all of our responsibilities and created for all. It is due to the formative years of our community Each research project has formed the foundations that are promises. It is immensely satisfying to know that we are operating fundraising, the governance of our board and the leadership now strengthening our understanding and making advances in a good “business” and that it fully supports our path to achieving of our executive team, that we have remained strong, despite Bone Marrow Biology. Together with the formation of this and our mission. the challenges. I do hope you will join with me and our family in Federal Government funding to support clinical trials directly, we celebrating what you have all helped to create and see how you have created a national collaborative network that is receiving have helped changed lives. It would be remiss if I did not ask international attention. you to continue to join our fight against Bone Marrow Failure. What do I hope for in the future? The fight is not over yet but after reading our Annual Report, In conclusion, I think it is fair to say that the first two years of I am confident that you will understand that we are putting your generosity to meaningful outcomes for people. Has our work truly benefitted people with founding Maddie’s Vision were some of the toughest. Our family was naturally grieving a huge loss, but it was also difficult to see Bone Marrow Failure, and where does our a light at the end of what seemed to be a dark tunnel. While we work sit nationally and internationally? were fundraising and getting to work to build an organisation that would seriously do what nobody else had done in medical Our board meets regularly throughout the year. It is our role research, the task seemed, at times, to be overwhelming. Bit to manage the risk, oversee the operations and challenge the by bit, event by event, contribution by contribution, we edged critical decisions on our trajectory forward towards a cure. We towards one project and another, then even more. When the Nicholas Riewoldt, Chair, Maddie Riewoldt’s Vision are constantly assessing, discussing and needing to approve Maddie Riewoldt’s Vision Annual Report 2019/2020 8 Introduction 9 A message from our The legacy CEO, Nicky Long of a determined young woman At the heart and soul of all we do are people. Our purpose is is not only an integral educational piece for us and the broader Maddie Riewoldt was just 26 years old when she to create certainty about survival following a diagnosis of Bone audience, it keeps us all truly focussed on the energy and died of complications of a Bone Marrow Failure Marrow Failure. For every child and their family dealing with momentum required to create models for change and we are on Syndrome called Aplastic Anaemia. She was this diagnosis, Maddie’s Vision provides the hope that improved track to achieve this. diagnosed at 21 and for five tough years, she put treatments and survival rates will be discovered. We want to up a brave fight. She spent those years enduring find the solutions. From the very first good, willing and generous Thank you so much for all of your vital work and partnership in a bone marrow transplant and two additional people appointed to the board, through to my appointment in the last five years.