A new Australian initiative to accelerate research into rare Bone Marrow Failure Syndromes (BMFS) is now open and recruiting participants.
The Australian Marrow Failure Biobank (AMFB) at Monash University, supported by Maddie Riewoldt’s Vision, is a dedicated disease-specific collection housed within Biobanking Victoria – one of Australia’s leading and internationally recognised biobanking facilities.
This national initiative is a collaboration between Maddie Riewoldt’s Vision and Monash University and represents a critical new resource for researchers investigating the causes, treatments and potential cures for BMFS.
The AMFB – established after years of strategic planning, advocacy and fundraising by Maddie Riewoldt’s Vision – is a dedicated, disease-specific collection of biological samples designed to transform Australia’s rare disease research capabilities.
In 2020 Maddie Riewoldt’s Vision initiated a national call for applications to identify a laboratory capable of hosting Australia’s first dedicated biobank for these rare and life-threatening conditions.
Following a rigorous selection process, Monash University was appointed as the host Institution.
Amy Coote, CEO of Maddie Riewoldt’s Vision, said Maddie Riewoldt’s Vision remains an instrumental partner in the AMFB, not only through ongoing funding but also continued engagement with our BMFS clinical, research and patient communities.
“Establishing the AMFB has been a priority for Maddie Riewoldt’s Vision since our inception. It represents a vital resource in our mission to accelerate research into Bone Marrow Failure Syndromes and improve outcomes for patients and their families,” Amy said.
“Through our ongoing advocacy efforts, we are incredibly grateful to have received a recent funding commitment from the Federal Government which will help secure the future of the Biobank and its potential to facilitate lifesaving research.”
Professor David Ritchie is a Haematologist and Bone Marrow Transplant Specialist, and Director of the Maddie Riewoldt’s Vision Centre of Research Excellence in Bone Marrow Biology. "The best discoveries are made when scientists and clinicians have coordinated access to detailed data and good quality samples to undertake analyses and explore new concepts that underpin the development and treatment of disease,” Professor Ritchie said.
“This coordination is now in place with the fantastic work being done through the Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry and the AMFB. The team at Maddie's Vision should be rightly proud in their contribution to making this a reality.”
The AMFB is a product of a collaboration between Professor Erica Wood AO, whose team at Monash’s School of Public Health and Preventive Medicine lead the national Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry (AAR), and Professor Melissa Southey OAM, whose team at the School of Clinical Sciences at Monash Health lead Biobanking Victoria.
The AAR collects and analyses information that helps to understand the diagnoses, treatments undertaken, and clinical outcomes for people living with these conditions in Australia, and has data on over 600 patients. The new addition of biological material corresponding to registry data will expand, expedite and enhance research into BMFS.
“Registries are vital for research in rare conditions, where it is especially difficult to carry out clinical trials,” Professor Wood said. “Biobanks extend this work by providing access to important biological samples, which help us to understand the biology of these diseases and test potential new treatments.”
Professor Southey is the Chair of Precision Medicine, School of Clinical Sciences at Monash University and Director of Biobanking Victoria. “Adding biobanking to the Registry’s attributes is a huge boost to Australia’s research capacity into bone marrow failure syndromes,” Professor Southey said. “By bringing clinical, biobanking and registry expertise together, our teams have achieved something they could not have done alone.”
For patients and families living with BMFS this scientific milestone brings renewed hope for a future where better treatments, and ultimately a cure, are within reach. No one understands the life-changing potential of this research more than Cheryll, grandmother to 15-year-old Matty, who was born with the rare inherited BMFS, Fanconi anaemia.
“As a patient and family representative this milestone means so much,” said Cheryll, who is also a member of the AAR & AMFB Steering Committee. “The first sample collected by the AMFB is a real step forward. It’s taken years of hard work to get to this point, and it's a clear sign of progress. These samples will help drive research that can lead to better treatments and better lives for patients – and that’s what matters most.”
The AMFB is now actively recruiting participants and welcoming interest from clinicians, researchers and collaborators across Australia.
To contact the AMFB, please send your enquiries to [email protected]
Additional Information
Bone Marrow Failure Syndromes (BMFS) are rare, life-threatening conditions in which the body’s ability to replenish the supply of healthy blood cells is impaired. Every 3 days an Australian is diagnosed with a BMFS. Tragically, most are children and young adults, and 50 per cent will not survive. Thousands more live with complex medical challenges and ongoing health risks, including a significantly higher chance of developing cancer.
A BMFS diagnosis is deeply isolating for patients and their families. Navigating the complex treatment journey, accessing reliable information, and finding appropriate support resources can be confusing and overwhelming.
That’s why Maddie Riewoldt’s Vision is here.
For 10 years, Maddie Riewoldt’s Vision has been the only organisation in Australia dedicated to driving BMFS research, advocacy, education and support for patients and families.
To learn more about Maddie Riewoldt’s Vision visit www.mrv.org.au
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For media enquiries, please contact:
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For media enquiries involving Cheryll, the patient family representative, please contact:
Zoe Austin
Marketing & Communications Manager, Maddie Riewoldt’s Vision
M: 0488 061 806