Rebecca (Bec) Sheean

Experienced Programs Director and collaborative leader with a strong background in the not-for-profit sector, specifically in the field of Motor Neurone Disease (MND). With over 18 years of experience in MND, I have developed deep expertise in pre-clinical and clinical research, research investment, and governance. Skillset includes critical thinking, strategy development, and implementation. Proven track record of overseeing projects from design to delivery, managing teams, and consistently delivering high-quality work within tight deadlines. Strong values of integrity and collaboration shape a passion for health and medical research, consumer engagement, and adopting a collective and strategic approach to solving complex problems, particularly in relation to MND. Demonstrated strong leadership and communication skills in fostering collaborative environments and achieving impactful results. Long-term goals include being a leader within my organisation and leading international programs and task forces to drive collective breakthroughs, develop new treatments, and improve care for individuals living with MND.

• XLI CLUB Tony Charlton AM – Community Service Award August 2023

Recognises and outstanding Victorian who like Tony Charlton had made a significant and sustained contribution to the Community through a commitment to community service

• Morris ALS/MND Principles Certificate April 2022

For upholding the Morris ALS/MND Principles – to act with urgency and put those living with ALS and their loved ones first.

• Establishment of the MND Research Collective (Co-Chair)

A national collaborative initiative which aims to unite MND researchers across the research landscape in the fight against MND and to keep the voices of people with lived experience at the centre of research and care decisions

• Global MND Research Round table, Lead design and delivery (August 2024)

This event brought together 50 delegates from across the globe, with expertise in MND research, global collaboration and industry experience as well as those with lived experience of MND to collectively tackle some of the most critical challenges in MND research. Outcomes from the event will include a global strategy, white paper, outcome document and global collaborations.

• MND Research Collective Workshop, Lead delivery and co-design (May 2023)

This event brough together members of the MND Research Collective and included the establishment of the Lived Experience Research Advisory Panel.

• National MND Symposium, Brisbane - Organising and Programme Committee) (April 2022)

This event brought together researchers, clinicians and people with lived experience to discuss research and care progress and facilitate networking and collaboration.

• Australian MND Research Summit, Virtual event - Lead delivery and co-design (2020)

The inaugural Australian MND Research Summit focussed on identifying research priorities and opportunities for national collaboration. It was run in partnership with PWC’s Impact Assembly and MND Research Australia

• Australasian MND Symposium, Melbourne - Lead delivery, member of Program Committee (2018)

This event hosted 450 delegates across a 3-day event and included plenary, parallel and workshop sessions across research and care, trade displays and social/networking events. This event was delivered with a very small team and small budget and I was able to secure over $120,000 in sponsorship for the event.

FightMND funding

• Health Policy Research and Data - Advancing research into the causes and treatment(s) of Motor Neurone Disease in Australia, $2M (awarded 2023)
• Health Policy Research and Data - Delivery of Early-Phase Clinical Trial/s for Australians with Motor Neurone Disease, $2M (awarded 2020)
• Health Policy Research and Data – MND Translational Research Pipeline grant, $3M (awarded 2019)
• MRFF Accelerated Research Investment - National MND Precision Medicine and Clinical Trials Pipeline grant, $2M (awarded 2018)
• MRFF Accelerated Research Investment – Motor Neurone Disease Program, $1.96M (awarded 2017)

Florey Institute (personal grant funding)

• Perpetual’s 2016 IMPACT – Margaret Dawn Marks Charitable Trust Fund Grant, $22,000 (2016)
• Motor Neuron Disease Research in Australia - Jenny and Graham Lang Collaboration Grant, $9,840 (2013)

• Dr Fiona McIntosh
• Amanda Nolan