About Maddie Riewoldt’s Vision

We are a small, passionate team with ambitious goals and the support of an incredibly talented, generous and resilient community. Our research is already making extraordinary progress towards developing better treatments and cures for Australians diagnosed with Bone Marrow Failure Syndromes.

Maddie Riewoldt was just 26 years old when she died of a Bone Marrow Failure Syndrome called Aplastic Anaemia. She endured several bone marrow transplants, multiple blood transfusions and ongoing treatments.

When her fight was ending, she asked her family to make her a promise; Maddie wanted nobody else to go through what she did. in 2015, her family established Maddie Riewoldt’s Vision as her legacy.

Our Vision is that all Australians diagnosed with Bone Marrow Failure Syndromes get to live long, happy, healthy lives.

Our Mission is to fund the vital research required to develop new treatments and cures for Bone Marrow Failure Syndromes. So that no one has to go through what Maddie did.

We have raised almost $10m to fund a portfolio of 31 cutting edge research projects into Bone Marrow Failure Syndromes. We partner with Australia’s preeminent research institutions, directing our funding to the most promising research, including the development of exciting new clinical trials.

The engine room of our research efforts is our Centre of Research Excellence (CRE) in Bone Marrow Biology – the only one of its kind in Australia. The CRE comprises the brilliant minds and passionate hearts of our many researchers, providing a unique forum for collaboration and discovery to accelerate and amplify the research outcomes that will lead to new cures.

What are Bone Marrow Failure Syndromes?

Bone Marrow Failure Syndromes (BMFS) are a rare, complex and highly debilitating group of diseases. Approximately 160 Australians are diagnosed with BMFS each year. Distressingly, most of them are children and young adults. Sadly, 50% of people diagnosed, will die from the condition – this must change.

This opportunity

We are looking for someone special to fill a critical leadership role that will be key to supporting the delivery and growth of our outstanding research portfolio – if this sounds like you, we’d love to hear from you!

Working closely with our Centre of Research Excellence (CRE) Executive, our independent Scientific Advisory Committee, our researchers, and our partner research institutions, you will be instrumental to the delivery of our research strategy and goals. You will drive engagement with our diverse stakeholders to inspire and secure ongoing support and demonstrate the impact of our research efforts.

Your key responsibilities will include:

Centre of Research Excellence (CRE)

• Lead the delivery of 4 year CRE strategy, plan, budget and milestones with support of CEO, CRE Medical Director and CRE Executive
• Provide strategic support to the CRE executive
• Actively pursue and develop international collaborations, including international clinical trial opportunities.

Scientific Advisory Committee (SAC)

• Provide strategic support to the SAC, including the Gene and Cellular Therapies subcommittee, develop annual plan with regular research grant rounds, ensure setting of agendas, meetings, minutes and actions
• Working with the CRE Medical Director, CEO and SAC to identify key areas of future research aligned to CRE’s 5 Pillars of Research

Research Funding

• With the support of the CEO and Medical Director, contribute to sustainable long term research funding strategy, and actively pursue and secure sustainable funding for CRE strategic plan and goals.

National Symposium, Patient & Family Fora

• Lead the planning, development and delivery of the biennial National Scientific Symposium, and the annual Patient and Family Forum, including securing expert, high-profile national and international speakers; and valuable sponsorships

Telehealth Nurse Service

• Provide clinical and management support to Telehealth Nurse in the delivery of support to BMFS patients and families
• Promote and lead the growth of the service nationally

Stakeholder Engagement

• Lead on the development of collaborative relationships with research bodies, institutes, hospitals, universities and partners nationally and internationally to identify and pursue opportunities.
• Working with the Marketing & Communications Manager, develop effective communications for key stakeholders to articulate research aims, achievements, and impact, including impacts on the lives of people with lived experience of BMFS.

Key Selection Criteria

• Graduate degree in science or medical research; medical research and/or clinical knowledge in haematology
• Strong strategic thinking and planning expertise, with proven ability to mobilise diverse stakeholders to achieve shared goals
• Excellent skills in building long-term, collaborative relationships with diverse stakeholders, including internal teams, patients, researchers, clinicians, government representatives and collaborative research partner institutions.
• Experience in, and commitment to consumer centric medical research
• Excellent verbal and written communication skills; able to articulate complex information simply and clearly and communicate impact
• Strong analytical skills, highly organised with attention to detail
• Resourceful and flexible; comfortable working in a small cross functional team with excellent client service and stakeholder management skills
• Strong alignment with, and commitment to our mission and values
• Highly motivated and energetic, with demonstrated ability to lead effective decision making

If you have any questions, please reach out [email protected], using the subject line: Director of Operations, Centre of Research Excellence for Bone Marrow Biology enquiry via EthicalJobs.

Please refer to the Position Description attached.