NZ MND Research Network and You

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.

ALSUntangled reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them. People with MND/ALS often consider alternative or off-label treatments (AOTs) they read about on the internet. Internet information about AOTs is not always accurate. ALSUntangled gathers all the data about AOTs and categorize the level of evidence to support these treatments.

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. Genetics of motor neuron disease in New Zealand The purpose of this study is to understand the genetic causes of MND in New Zealanders.  It hopes to learn where in the world and when (how many generations ago) the genetic errors seen in New Zealanders with MND arose. This study is open to all people with MND in New Zealand whether they are gene-carriers or not. Click here to read more about this study.

4. Wave Life Sciences: FOCUS-C9 clinical trial. The Phase 1b/2a study known as FOCUS-C9 aims to evaluate the safety and tolerability of WVE-004 in people with MND caused by a mutation in the C9orf72 gene or C9orf72-associated frontotemporal dementia (FTD). WVE-004 uses an approach known as ‘antisense’, where the drug directly interferes with the faulty instructions for making a protein. More information about this trial in New Zealand is available here. 

5. Non-motor symptoms in motor neuron disease questionnaire. Although the dominant symptoms of MND involve muscle weakness, Professor Ammar Al-Chalabi at King’s College London is interested in the non-motor symptoms that can occur with MND. Non-motor symptoms are symptoms unrelated to muscle weakness such as cold legs, bladder problems, etc. This study is examining what non-motor symptoms occur in MND, how common they are and how much they affect quality of life. The information you provide will be a valuable resource to help them develop treatments and diagnostic tests for MND. Click here to access the participant information sheet. 

6. Download the ALS Nutrition App. Researchers at Massachusetts General Hospital have designed a mobile health nutrition app to calculate and track ALS calorie goals.  Studies show that people with ALS do better when they maintain their weight, compared to those who lose weight. You also have the option to contribute to research, by sharing your dietary and disease data with researchers.

7. 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.

8. Participate in the Precision Medicine Program (PMP) translational research study in amyotrophic lateral sclerosis (ALS). Through the PMP, researchers at ALS Therapy Development Institute Partner with people with ALS to gather data to learn more about this disease. People from around the world share their data on movement, lifestyle, medical history, genetics, biomarkers, voice recordings and patient cell biology. By participating in the PMP, you can access your own disease progression data while also helping to find effective treatments for ALS. Details about the PMP study are available here. 

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