Until there's a cure ... there's care

If you have motor neurone disease you can help research in a variety of ways.  This includes providing information on your condition, donating a blood sample or by donating your brain and spinal cord tissue. 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 Institute of Australia (MNDRIA).

Join the Australian Motor Neurone Disease Registry (MND Registry)

The MND Registry is an ambitious project to register and collect data from every person diagnosed with MND in Australia. It contains de-identified data from people diagnosed with MND including information about the diagnosis, symptoms, treatment and management. This information is available to researchers who are studying MND.

The MND registry provides people living with MND with an opportunity to actively contribute to research and learn more about the disease.  The participant’s neurologist will fill out a case report form detailing the treatment and health situation at the time of the visit. There are no extra tests, procedures or treatments involved. People are free to decline or to withdraw from the study at any time.

If you would like any further information concerning this project visit  http://www.mndregistry.org.au or contact Anna Smith by phone: 03 9595 3355 or by email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Donate to the MND Research Tissue Bank

The MND Research Tissue Bank facilitates research into the study of MND by providing post–mortem tissue to researchers who, using current technologies aim to unlock our understanding of how MND occurs and this will hopefully lead to improvements in diagnosis, development of early diagnostic tests, therapeutic interventions and development of preventative strategies.

The MND Research Tissue Bank is seeking people interested in registering for brain and spinal cord after death. It is also vital to compare brain and spinal cord from people who do not have MND. Family members and friends may also consider registering as a donor.

If you are interested in registering as a donor, or finding out more about becoming a tissue donor, visit https://www.florey.edu.au/vic-brain-bank or contact: Ms Fairlie Hinton, Coordinator MND Research Tissue Bank Telephone: 03 8344 1900 Mobile: 0438 530 372 Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

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 collaborators 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. If you are interested in donating than phone (02) 9767 6796 or email This email address is being protected from spambots. You need JavaScript enabled to view it. for further details.

Complete the ALS Quest survey

ALS Quest is a research project being conducted by Sydney University that is looking for risk factors underlying MND (also known as ALS). The anonymous ALS Quest online questionnaire can be completed by both people with MND and people without MND.

ALS Quest asks a series of questions about a person’s lifestyle, work history and family history with the aim of discovering clues as to what factors trigger MND. The questionnaire and instructions for how to complete it can be found at www.alsquest.org

To find out further information about ALS Quest visit their Facebook page: https://www.facebook.com/ALSQuestSydneyUni/, follow them on Twitter: https://twitter.com/ALS_Quest or contact the head researcher Associate Professor Roger Pamphlett Phone: (02) 9351 0972 or Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Join PatientsLikeMe

PatientsLikeMe is an online treatment and outcome sharing community for people with a range of conditions including MND/ALS. The site is based in the US but is global in scope. By joining you are able to share your experiences of symptoms and treatments with others who have MND and with researchers. It provides you with the opportunity to track your health over a period of time, share ideas with others with MND and participate in research.

To find out more visit https://www.patientslikeme.com/

Donate money

Money can be donated to the MND Association of Victoria or directly to the MND Research Institute of Australia (MNDRIA) 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 MNDRIA. However, the Association does consider support for other research projects, particularly those which will advance patient care and management.

Motor Neurone Disease Research Institute of Australia (MNDRIA)

MNDRIA promotes medical and scientific research into motor neurone disease and other associated diseases.

The Motor Neurone Disease Research Institute 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.

MNDRIA 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.  MNDRIA 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 web site.

MNDRIA is an Approved Research Institute, meeting the conditions of the Income Tax Assessment Act Section 73A.  Gifts to the Institute 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.

Website: http://www.mndaust.asn.au/mndria/ Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Telephone: (02) 8287 4989

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