How can I help MND research?
If you have motor neurone disease you can help research in a variety of ways.
1. Join the MiNDAUS Registry.
2. Provide information on your condition to researchers.
3. Donate a blood sample or donate your brain and spinal cord tissue after death.
4. People without the disease can also help by taking part in research projects and by donating money to MND Victoria directly or to the Motor Neurone Disease Research Australia (MNDRA).
Every year, MND Victoria fund three research grants through MND Research Australia - the Jenny Simko MND Research Grant, the Mavis Gallienne and Graham Lang MND Victoria Research Grant, and the Superball MND Research Grant. The document below details the progress of these grants for 2019-2020 and 2020-2021.
Grant Progress Report - August 2021.docx
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.
Visit the MiNDAUS Registry to find out more, or contact us on 9830 2122.
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 email@example.com for further details.
Money can be donated to the MND Association of Victoria or directly to the MND Research Australia (MNDRA) 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 the MNDRA. However, the Association does consider support for other research projects, particularly those which will advance patient care and management.
Motor Neurone Disease Research Australia (MNDRA)
MNDRA promotes medical and scientific research into motor neurone disease and other associated diseases.
Motor Neurone Disease Research Australia funds Australian researchers in the search for cause, treatment and cure of motor neurone disease (MND). Projects funded include basic science and research into care and management of the disease.
MNDRA makes grants of funding for research following determination of the relative merits of research proposals for the study of motor neurone disease and associated diseases for the receipt of research grants. Grants are administered, and progress of the relevant research monitored and reported. MNDRA facilitates the exchange of information about motor neurone disease and associated diseases by sharing reports on research and progress of research funded by its grants via written reports and its website.
MNDRA is an Approved Research Institute, meeting the conditions of the Income Tax Assessment Act Section 73A. Gifts to MNDRA are tax deductible. It is affiliated with other bodies, national and international, including the Motor Neurone Disease Association of Australia and the International Alliance of ALS/MND Associations.
Telephone: (02) 8287 4989
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.
Learn about Clinical Trials