Maddie Riewoldt's vision supporting the Centre of Research Excellence in Bone Marrow Biology.
When Maddie Riewoldt died, her family established Maddie’s Vision in June 2015, with the aim of finding a cure through medical research in honour of her memory.
Maddie fought Bone Marrow Failure Syndrome (BMFS) for five years. During that, the family discovered just how little there was known about this life-threatening illness and that there were almost no new treatments options.
The therapies available to Maddie were not generally well-tolerated and were difficult to manage in a life that had already been disrupted by illness.
To achieve better outcomes, and to ultimately find a cure for BMFS, Maddie’s Vision worked with its own Scientific Advisory Committee to develop a National Research Strategy. Their aim is to fund the research projects and people who will discover the important breakthroughs this area of medicine.
With so little known about Bone Marrow Failure the work is only beginning about this rare disease which sadly, 50% of young people diagnosed with will not survive.
Since inception, Maddie's Vision has raised more than $8.5 million enabling a commitment to 24 medical research projects.. The projects are in partnerships with national medical research institutes, hospitals and universities across Australia. More detail available here https://www.mrv.org.au/page/83/current-projects
Maddie’s Vision and its work is further enabled by the world's first Centre of Research Excellence (CRE) in Bone Marrow Biology which was established in 2018. 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 CRE in bone marrow biology means Maddie Riewoldt's Vision can have capacity to incorporate additional projects and gather a critical mass of researchers and infrastructure to help find a cure by accelerating and amplifying research outcomes.
With cutting edge research underway, Maddie’s Vision is now fundraising for more significant projects, including the establishment of a world first National Bone Marrow Biobank to collect and store the essential tools for this research - tissues, blood and genetic material.
Maddie’s Vision is committed to funding and supporting this research, and the development of collaborative, accessible information systems.
It offers funding opportunities in three categories each year - Grants-in-Aid, Fellowships and Programs, and supports a national collaboration via diagnosis registry, establishment of a biobank to collect and store tissue samples and importantly the governance and support of the Centre of Research Excellence in Bone Marrow Biology.
To make contact or learn more about the work, visit mrv.org.au.
This organisation is supported by trusts managed by Equity Trustees.