The MND Research Collective was launched in 2020 and is a concept co-designed with around 50 experts from lived experience, medicine, healthcare, and research. The MND Research Collective is not a new entity or organisation, but rather the coming together of existing groups, organisations and stakeholders under a shared focus and vision and with a common agenda.
From this shared goal and focus The MND Research Collective creates a joint approach to solving complex problems. It aims to encourage and facilitate a collective approach to research that enables better outcomes for people living with MND.
MND is an incredibly complex disease and presents an enormous challenge for the MND research community. The causes the disease or what controls the progression remains unknown. Together with the lack of effective treatments, it is a problem that cannot be solved in isolation, but rather will take a collective approach of the brightest minds across the research and health care landscape working together with people with MND to bring an end to the disease.
Solving a complex problem is an enormous and almost impossible task for an individual or individual organisation to achieve. Considered a rare disease, MND has not received the attention and funding needed to enable researchers, and healthcare practitioners to advance their understanding of the disease, develop and provide access to promising treatments, and ensure delivery of equitable best practice standard of care. Since 2014, commencing with the success of the ice-bucket challenge in both raising the profile and funding of MND both here and worldwide, there has been an incredible influx in research investment and a burst of momentum and optimism. This presents a unique opportunity to bring together key stakeholders across the MND landscape, with the voices of people with MND at the centre, to work together in effective and impactful ways. Through shared goals and objectives, we saw an opportunity to drive meaningful change in the sector through the establishment of an MND Collective.
We are now accepting applications for membership to the MND Research Collective. Membership is free and is open to MND researchers and MND professionals. As a member of the MND Research Collective, you will receive regular email updates. Research and professional members will have access to the MND researcher database and a mentoring program, both of which are due to be launched late 2024. To sign up to be a member of the Collective, please fill in the registration form.
The MND Collective board has representation from both FightMND and MND Australia, as well from state MND associations, the MND and Me Foundation, MND researchers, clinicians, allied health professionals and the lived experience community. To advise the board are three advisory committees: the Discovery Research Expert Driving Team, the Clinical Care Expert Driving Team and the Lived Experience Research Advisory Panel.
