MND Information
Research
How can I help MND research?
If you have motor neurone disease you can help research in a variety of ways.
- Join the MiNDAUS Registry.
- Provide information on your condition to researchers.
- Donate a blood sample or donate your brain and spinal cord tissue after death.
- People without the disease can also help by taking part in research projects and by donating money to MND Victoria directly or to MND Australia.
Every year, MND Victoria fund two research grants through MND Australia – the Jenny Simko MND Research Grant and the Mavis Gallienne and Graham Lang MND Victoria Research Grant. The document below details the progress of these grants for 2019-2020 and 2020-2021.
MiNDAUS Registry
The MiNDAUS Registry is a partnership of people diagnosed with MND, their doctors and researchers. The Registry aims to help to find new treatments for MND and work towards a cure.
You can sign up to the Registry, use its secure platform to manage your health information and choose whether/how much to share your information with your healthcare team.
By sharing your health information, you will help doctors and researchers and you will be notified if there are clinical (research) trials that you are eligible to take part in.
Research
updates
Participate in Familial MND Research
Professor Garth Nicholson and his research team based at the ANZAC Research Institute, Concord Hospital Sydney, are studying gene variations in familial motor neurone disease. Professor Nicholson and his team are keen to obtain DNA samples from patients with familial motor neurone disease.
To assist this research, a single blood sample is required together with your consent to take part in the research and, where necessary, your permission to obtain a copy of clinical information from your treating physician. The blood sample can be taken locally and then sent to Sydney for analysis.
Contact (02) 9767 6796 or molmed@med.usyd.edu.au for further details.
MND Australia's Research Grants Program
MND Australia's research grants program was established in 1984. This program was initially administered by their research arm, MND Research Australia.* In November 2024, MND Research Australia officially merged with MND Australia.
Following the merge, MND Australia remains committed to promoting a robust and dynamic research grants program to uncover the causes, improve care, and develop new treatments for MND. Every year, they allocate a combination of multi-year research fellowships, innovator grants and PhD top-ups to Australian-based researchers working in the field of MND research. Since 1984, they have funded over 450 research projects worth more than $50 million.
MND Australia's research grants program is wholly funded through donations and bequests. Any money donated to MND Victoria or MND Australia for research will be directed to MNDA's grants program.
The aims of the research program are to:
- promote medical and scientific research into MND
- determine the relative merits of research proposals for the study of MND for the receipt of research grants
- administer research grants for the study of MND
- facilitate the exchange of information about MND
- affiliate with other bodies, either national or international, to advance the cause of research into MND
- raise funds to support research into MND
Contact MND Australia via email research@mndaustralia.org.au or by telephone on (02) 8287 4980.
*MND Research Australia was previously known as the Motor Neurone Disease Research Institute of Australia, the A.L.S. Research Institute and the A.L.S.–Motor Neurone Disease Research Institute Incorporated.
Clinical trials
A clinical trial is a research study using human volunteers to study the safety and effectiveness of a drug, treatment, or device in improving health outcomes.
Donate money to fund research
Money can be donated to the MND Association of Victoria or directly to MND Australia for the specific purpose of funding research, including scientific, care and management research.
At this time, all funds received by MND Victoria for research are given to MND Australia. However, the Association does consider support for other research projects, particularly those which will advance patient care and management.
