Maddie’s legacy: bone marrow biobank founded to push Maddie Riewoldt’s Vision for a cure

Maddie Riewoldt’s legacy has inspired the opening of a Melbourne biobank researching Bone Marrow Failure Syndromes.

One of Maddie Riewoldt’s most important visions has been realised with the launch of an Australian-first biobank set to fast track research into Bone Marrow Failure Syndromes.

Housing thousands of tissue samples from patients across Australia, the Clayton biobank paves the way for new and clinical trials and research into treatments to overcome conditions such as that which claimed Ms Riewoldt’s life in 2015.

Before St Kilda and Richmond players even set foot on Marvel Stadium for tonight’s annual Maddie’s Match, those continuing her legacy through Maddie Riewoldt’s Vision are celebrating reaching the crucial goal.

“The biobank has been part of that vision since Maddie’s Vision’s inception,” MRV director Dr Simonne Neil said.

Nick Riewoldt with Daniel Milani, 10, and Joel Waddington, 11, who have Severe Aplastic Anaemia. Picture: Tim Carrafa

“It will really empower scientists and researchers to ask very complex and complicated questions, to get to the epicentre of understanding bone marrow biology and discovering new treatments.

“We are so fortunate to have exceptional supporters across all industries and across the community. Through events like Maddie’s Match it is the community we are reaching out to and we are so grateful for their support.”

Maddie Riewoldt’s Vision was founded by the Riewoldt family following Maddie’s death in 2015 to continue her dedication to finding a cure for bone marrow conditions.

About 160 Australians a year are diagnosed with Bone Marrow Failure Syndromes – a collection of medical conditions where the bone marrow stops working resulting in anaemia, increased risk of infections, bleeding and bruising – and more than half die from the condition.

Cousins Nick and Jack Riewoldt in the lead up to Maddie's Match. Picture: David Caird.

Housed at Monash University’s Biobanking Victoria, the new centre will store samples of diseased bone marrow, blood and other tissue from patients across Australia to provide scientists with a ready-made collection to examine next generation treatments, or better understand the conditions.

Backed by $1 million in funding raised by MRV to operate the biobank over the next three ears and a $315,000 contribution from the Andrews Government, the Australian-first biobank is seen as a crucial step in developing a cure for the condition which typically strikes those aged 17 to 40.

Set to open in May, Innovation and Medical Research Minister Jaala Pulford said the Clayton biobank was the next step in finding a cure.

“About 160 Australians are diagnosed with bone marrow failure syndromes each year and hundreds more continue their battles, which is why it’s so important we continue to invest in this important research,” Ms Pulford said.

Nick and Jack Riewoldt with four-year-old Elliott Vanderland who is diagnosed with aplastic anaemia. Picture: Jason Edwards

First diagnosed with Severe Aplastic Anaemia – the same version of the syndromes suffered by Ms Riewoldt – in 2016, 11-year-old Joel Waddington and his family are celebrating the promise the biobank offers.

First diagnosed with Severe Aplastic Anaemia – the same version of the syndromes suffered by Ms Riewoldt – in 2016, 11-year-old Joel Waddington and his family are celebrating the promise the biobank offers.

While a July 2016 bone marrow transplant from a sibling kept the condition at bay in its initial stages, telltale bruises in early February 2019 were the first sign it had returned, requiring regular blood and platelet transfusions.

New medications that had not even been approved when Joel were first diagnosed have offered a reprieve from transfusions and thankfully Joel is now in remission however his mother Judy Waddington is also thankful the latest support may allow research to remain at least one step ahead.

“I am a very positive person and consider our family to be very lucky that Joel’s health and life has been able return to the new normal,” Mrs Waddington said.

“We are hoping that we don’t need any more treatment in the future.

“But it is very reassuring that there is research going on.

“The tissue bank is the gold standard. It will go a long, long way for potential treatments in the future.”

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