Our mission is to find a cure for Bone Marrow Failure Syndromes (BMFS). Founded in June 2015 by the Riewoldt Family, the aim is to understand more about BMFS through medical research. Current therapies are not well tolerated and today's BMFS patients and their families face a narrow range of treatment options that are very disruptive to daily life.
Our organisation was founded in collaboration with the Snowdome Foundation (an NFP that funds research into new treatments for blood cancers). Maddie's Vision and Snowdome now operate as separate entities but we still work in close partnership on a number of research projects and events such as The Bloody Good Dinner. Maddie's Vision will be eternally grateful for the founding work and governance framework that Snowdome provided in our formative years.
To achieve better outcomes, and to ultimately find a cure for BMFS, we work with our highly reputable Scientific Advisory Committee to continue to develop a national medical research strategy. The Committee's aim is to fund the research projects and talented people who we believe will discover the important breakthroughs this area of medicine so urgently needs. Since inception in 2015, Maddie's Vision has raised over $9.5 million in committed funds and as at January 2020, over $4.5 million has already been allocated to supporting 24 medical research projects in partnership with medical research institutes, hospitals and universities across Australia. Each year, we will look for and continue to support the projects we believe will lead to breakthroughs.
Our vision is to lead the globe in creating a national collaboration towards a cure for Bone Marrow Failure Syndromes (BMFS). In 2018, with assistance from Victorian State Government funding, we established the world's first Centre of Research Excellence in Bone Marrow Biology (CRE). The CRE is a 'brains trust' in Bone Marrow Biology, a virtual centre that provides a centralised contact point for existing researchers, future researchers, commercial entities and community groups. The establishment of the CRE in Bone Marrow Biology provides Maddie Riewoldt's Vision with the capacity to incorporate additional projects, complete the critical mass of research and complimentary projects, provide additional infrastructure and the co-ordination of BMFS research required to find a cure for this disease.
In May 2019, the CRE presented Australia's inaugural National Symposium on Bone Marrow Failure Syndromes. The Symposium attracted 180 delegates, comprising the most prominent, innovative and talented clinicians and researchers in Bone Marrow Failure Syndromes Australia wide, allied health professionals, patients and family members. Our exceptional international guest speakers, Dr Akiko Shimamura, Professor of Paediatrics Harvard Medical School, and Director BMF and MDS Program Dana Farber/Boston Children's Cancer and Blood Disorder Centre, and Dr Austin Kulasekararaj of King's College Hospital NHS Foundation Trust, London, presented their groundbreaking work and expertise, and discussed opportunities to globally collaborate.
With cutting edge research projects underway we are now fundraising for further nationally and globally significant projects, including the establishment of the Australian Bone Marrow Failure Biobank. The purpose is to create a national biobank that will collect all tissues, blood and genetic material to store and analyse. This project will require a commitment of $1M over the first 3 years and we are well on our way with $350K already committed.
Throughout everything we do, we are committed to:
- funding and supporting cutting edge medical research.
- the development of collaborative, accessible information systems.
- fixed term financial support for young researchers through Fellowship positions and Grant in Aid support.
- national collaboration via a diagnosis registry, establishment of a biobank to collect and store tissue samples.
- governance and support of the Centre of Research Excellence in Bone Marrow Biology.