2016 Year in Review

Maddie Riewoldt’s Vision 2016 in Review #wearefamily 1 A few words from our Chair We hope that 2017 is off to a great start. On a personal level, it has been a The end of a year and beginning of a great privilege to be Chairman of new one is often a time for reflection. Maddie’s Vision since we formed in We have certainly been doing this. June 2015. While I will remain on the Our feeling is one of gratitude and board during 2017, I will be stepping deeper commitment - gratitude for down as Chairman, as I am relocating the generous support we receive and back to Tasmania with my family. It is passion from each and every one of bittersweet, but this is certainly not a you. 2017 will see an even deeper case of goodbye. commitment and determination to fulfill our mission, and because of I am delighted to announce the your support we can continue to fund appointment of the Director of our vital research (featured later in this board, Jennifer Trethewey, as the new newsletter). Chairman of Maddie’s Vision. Jennifer is the founder of global change It’s hard to believe we are now into our management consulting firm, JTG second full year at Maddie Riewoldt’s Global and brings to the position a Vision. What a remarkable year we had wealth of knowledge and experience in 2016! drawn from 30 years in senior management roles across a number of If you follow us on social media, you industries. Jennifer is also Officer on will know how much was achieved by Board of Governor’s so many devoted supporters. There are for the International many highlights in our fundraising and Live Events importantly, in our grants. We held and Association. Like were part of major fundraising events, me, Jennifer is also formed significant partnerships, and a lifelong friend of won Inaugural Charity of the Year at the Riewoldt family the Telstra Business Awards with our and was devastated collaborative partners, the Snowdome by the loss of Foundation. All of this has helped us Maddie in February raise $1.5 million to date, $560,000 2015. of which has already been granted to medical research projects. Lastly, thank you to our volunteer board and committees for everything you These achievements would not have have done to support me. I have every been possible without your support confidence that 2017 will be an even and for this I express my heartfelt bigger and brighter year for Maddie’s thanks. Your support is helping us make Riewoldt’s Vision as we take more steps substantial progress toward our mission towards a cure for Bone Marrow Failure. of finding a cure for Bone Marrow Failure Syndrome (BMFS). Jarrod Nation Chairman I would also like to acknowledge and thank the Riewoldt family for being so willing to share Maddie’s Story. I know this isn’t easy, but your contribution has been crucial in raising awareness and support for the extremely important work we undertake. 2 In 18 months: Total funds raised Awarded in grants & more to be awarded in early 2017 towards a cure 3 How are we using the funds to find a cure? Maddie’s Vision has awarded We have committed funds to support three grants in 2016 - $560,000 the following projects: in total to medical research into Completion of the establishment Bone Marrow Failure. We have of Australian Aplastic Anaemia also recently conducted another Registry call for grants and our aim is to 1The Aplastic Anaemia Registry financially support additional (AAR) is an initiative of the Transfusion Outcomes Research Collaborative projects in 2017. (TORC). TORC is a consortium of members of Monash University In particular, we Department of Epidemiology and are fundraising Preventive Medicine at The Alfred $600,000 to Hospital, along with members of the Red support a world Cross Blood Service. first biobank in The objective of TORC is to conduct $560,000 in collaboration with research aimed at improving outcomes Monash University of treatment of disorders with significant grants awarded and the Australian requirements for blood products that Red Cross Blood include rare conditions with high to in 2016 Service. Maddie’s very high reliance on blood product Vision is aiming resources, such as aplastic anaemia. to support the establishment To date, 41 major hospitals across of a world-class Australia have ethics approval and are Australian biobank participating in providing data to the of samples for national registry. aplastic anaemia (AA) and related bone marrow failure syndromes (BMFS). A national biobank will provide a new resource for Australian patients, clinicians and researchers, and leverage the investments already made in establishing the Aplastic Anaemia registry, funded by Maddie Riewoldt’s Vision. Creating a BMFS biobank will provide a crucial step towards linking the clinical disease with relevant biology, mandatory for furthering scientific research towards finding a cure. Maddie Riewoldt’s Vision has agreed to fund the registry for $78,000 for 2 years (milestones achievement pending). 4 Prevention and treatment of bone marrow failure in Fanconi anaemia and Maddie’s Vision committed funding of other inherited disorders – Dr Wayne $100,000 per year for three years for Crismani (St Vincent’s Research a Fellowship for Dr Wayne Crismani to 2Institute, Melbourne) support this project. Since then, Wayne There is a clear correlation has been offered a prestigious salary- between bone marrow only Career Development Fellowship failure and accumulation (CDF) from the National Healthand of damage to DNA. What Medical Research Council of Australia links these two problems (NHMRC). This is a highly competitive, remains to be understood. four year fellowship that recognises Fanconi anaemia, a type and provides support for the most of aplastic anaemia, is a outstanding early to mid-career heritable disorder where medical researchers in the Australian bone marrow failure system. occurs on average at age seven and is the The NHMRC Fellowship is a fantastic major cause of death at around age 16. Many opportunity for Wayne, providing full Fanconi anaemia patients also develop leukaemia, funding of his salary through until representing another overwhelming hurdle in the end 2020. It also reflects the their youth. At least 19 different proteins prevent robustness of the MRV Fellowship Fanconi anaemia by performing repair of DNA damage. The incorrect function of any one of selection process and is testament to the 19 proteins, due to inheritance of a genetic Wayne as an outstanding candidate defect, can lead to Fanconi anaemia. The group of worthy of investment. Wayne will retain Dr Andrew Deans, at St Vincent’s Institute (SVI), the title of MRV Fellow, but instead of is the first in the world to isolate and correctly the $100,000 per annum, three year assemble the Fanconi anaemia proteins in a test funding provided by Maddie’s Vision tube, so that their function in DNA repair can be being used to support Wayne’s salary, analysed in molecular detail. Using this unique it will instead support the direct tool, Dr Crismani is researching for a potential costs of his project, with some of the treatment that can compensate for the absence funding being returned to MRV to be of one of these proteins to allow correct function of the other proteins. This is the first step in redistributed to other projects. development of compounds that could prevent or treat bone marrow failure. www.svi.edu.au/news/svi_researchers_unlock_fanconi_anaemia_signalling_pathway/ Identification of microRNA signatures in aplastic anaemia – Dr Lynette Chee (Royal Melbourne Hospital) Aplastic anaemia (AA) is an acquired bone marrow disorder of the haematopoietic stem 3 cells and progenitors resulting in bone marrow hypoplasia and pancytopenia. Micro RNA is a small non-coding molecule found in aplastic anaemia. In 15% of cases, there is clonal progression to myelodysplastic syndromes (MDS), acute leukaemia and paroxysmal nocturnal haemoglobinuria (PNH). Standard treatment for aplastic anaemia involves immunosuppression due to underlying immune dysregulation in this disorder. Through her research, Dr Lynette Chee aims to: 1. Identify microRNA biomarkers* in aplastic anaemia predictive of how a patient will respond to immunosuppression 2. Identification of microRNA biomarkers* in aplastic anaemia predictive of clonal evolution / the likelihood of the disease progressing to MDS/ PNH / acute leukaemia and correlation with cytogenetic aberrations* *Biomarkers are molecules, genes or characteristics by which a disease can be identified *Cytagenetic aberrations are an abnormal structure or number of chromosomes in genes Funding of $200,000 over 2 years has been committed to supporting this project as a Grant in Aid 5 https://www.svi.edu.au/news/svi_researchers_unlock_fanconi_anemia_signalling_pathway/ Meet our Grants Committee Prof. David Ritchie Prof. David Haylock Prof. Suzanne Dr Rachel Conyers – Chair Crowe AM For more on our Grants Committee go to http://www.mrv.org.au/page/22/grants Partnerships take Maddie’s Vision from strength to strength We are thrilled to have formed a number of key partnerships with national and global organisations who have made ongoing commitments to support Maddie’s Vision. These partnerships are instrumental in not only funding research into Bone Marrow Failure, but also expanding our geographic footprint and sustainability. Snowdome Foundation www.snowdome.org.au The Riewoldt family and the Snowdome Foundation have partnered together to ‘power’ Maddie Riewoldt’s Vision to raise urgent funds and ‘make hope real’ for patients with blood cancers and diseases. Rather than start an entirely new charity, Maddie’s Vision collaborated with Snowdome Foundation to fast track our set up in June 2015. Together we have leveraged one another’s strengths. Snowdome’s mission is to accelerate new therapies for Australian blood cancer patients to help them live longer, better lives.

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