We are excited that there is a growing network of motivated people working with and for people with MND in NZ, and we hope you will be too. This website functions to allow MND researchers and specialists to interact with one another, but it has been created with the entire MND community in mind. Please feel free to explore. You may be particularly interested in the research profile pages which show some of what is happening in NZ’s MND research community. The home page also gives more detail about what the NZ MND Research Network is and what it does.
Where can I find more information about MND?
We recommend anybody who has received a personal or family diagnosis of MND who is looking for patient support and/or condition-specific information to click here to be taken to MND New Zealand.
For up-to-date information about progress in MND research around the world, we recommend exploring MND New Zealand’s suggested websites and videos here.
Can I be involved in research?
Yes. Being involved in research as a person with MND is a very personal choice and there is no pressure to become involved. People can become more or less passionate about being personally involved in research over time. If you do decide that you would like to participate in MND research there are a number of ways to get involved:
1. Join the New Zealand Motor Neuron Disease Patient Registry. This was launched in April 2017 and connects people living with MND to researchers, enabling New Zealanders with MND to participate in research and helping MND research grow in New Zealand. Click here for more information or to get in touch.
2. Consider donating your brain for research via the Neurological Foundation Douglas Human Brain Bank. This can be a big decision within a family and is something that the Brain Bank team are happy to discuss further with you. For more information please click here to contact the Brain Bank Director, Associate Professor Maurice Curtis, directly.
3. Fill in the ALS Quest online research questionnaire (and ask your partner or a close friend or family member to do it too).
4. Download the ALS Mobile Analyzer App and start using it regularly.
5. Participate in an international study being conducted by Natalie Leigh from the clinical psychology program at Lancaster University, UK. Anyone aged 18 or over who has a diagnosis of MND can participate. Click here for more information or go direct to the survey.
6. Check out clinicaltrials.gov for clinical trials investigating various treatments for MND across the world. Please be aware that many international clinical trials won’t accept overseas self-funded participants.