We all want a cure for Motor Neurone Disease. This section of the website is dedicated to helping you find up-to-date MND research from around the world. For the most current information, you may wish to look at the websites and videos below.
New Zealand MND Research Network
This network connects MND researchers in New Zealand with each other, and shares current research with the public.
ALS News Today
A daily digital news journal that reports the latest science and research news about MND/ALS.
MND Research Blog
Research updates are regularly posted on this blog, run the the UK MND Association.
ALS Research News
The latest research articles and news from ALS.net and ALS-TDI.org.
In The News
The ALS Association website's news section.
The Centre for Brain Research Auckland
The pre-eminent place in New Zealand for research into brain functioning, including MND. The Centre is linked to international research into MND. Professor Richard Faull,who leads the Centre, is the Medical Patron of MND NZ.
There are many clinical trials investigating various treatments for MND across the world.
The ALS Therapy Development Institute also lists clinical trials and those enrolling worldwide.
Please be aware however that many international clinical trials won’t accept overseas self-funded participants.
The MND Association has some excellent information on clinical trials here.
The International Alliance of ALS/MND Associations’ Scientific Advisory Council
The role of the International Alliance of ALS/MND Associations’ Scientific Advisory Council (SAC) is to be a centralized resource to review and provide global perspective on scientific and biomedical announcements, information and opportunities relating to ALS/MND. For more information on the SAC click here.
The SAC have provided briefing notes on a number of current clinical trials and treatments. Links to these notes are listed below.
MND New Zealand would like to thank the Board of Directors of the International Alliance of ALS MND Associations and the Scientific Advisory Council for sharing these briefing notes.
June 2020 - updates
Some people with MND wish to donate their brain and spinal cord to the Neurological Foundation Human Brain Bank at the University of Auckland. If this is something of interest to you then please discuss the wish with your family who will carry out your wishes when you die. Also, for more information on the processes and procedures please email email@example.com or phone 09 923 6072 and the Brain Bank Manager Mrs Marika Eszes will send you the details.
If the situation is urgent then please contact Professor Maurice Curtis who is the Deputy Director of the brain bank. Phone 021 287 8476 or email firstname.lastname@example.org
For more information, click here.
MND New Zealand proudly helps fund vital research at the Centre for Brain Research at the University of Auckland and supports the latest genetics study. Dr. Emma Scotter (Centre for Brain Research, University of Auckland), Dr. Richard Roxburgh (Neurogenetics Clinic, Auckland City Hospital), and collaborators are now recruiting for a study of the genetics of Motor Neurone Disease in New Zealand. Dr. Scotter says, “We invite people with MND (familial or sporadic, total 300 people) and people without MND or a family history of MND (total 30 people) to participate.”
The purpose of the study is to understand the genetic causes of MND in New Zealanders. In addition, the study aims to test how certain MND gene mutations affect human cells.
More information is available on our science news blog.
To find out more or participate contact Dr. Emma Scotter: email@example.com
In March, members of our team attended the first Australasian MND Symposium. Our notes are summarised in the following PDFs:
“It’s a very exciting time to be involved in MND research. There’s a lot of hope and positivity.” – Prof Matthew Kiernan, Bushell Chair of Neurology, Sydney Medical School
“I’m much more optimistic than I was 10 years ago. Researchers are intensely interested in MND.” – Prof Kevin Talbot, Head of Clinical Neurology, Univeristy of Oxford UK
“The rate of progress in recent years is very exciting.” – Lucie Brujin, Chief Scientist, ALS Association
Why Haven't We Found a Cure Yet?
We recommend watching this presentation by Professor Kevin Talbot, Head of Clinical Neurology at the University of Oxford, UK, which describes the complexity of MND and causes for optimism.
“MDT clinics are the biggest advance in the treatment of MND. Patients in MDTs live on average a year longer.” – Prof Jeremy Shefner, Barrow Neurological Institute, USA
“I’m really optimistic for the future for the next 5 to 15 years. It will lead to a cure.” – Prof Paul Talman, director, Australian MND Registry
There are some very interesting presentations online from the 2017 ALS Canada Virtual Research Forum. Click here to see the presentations available for on-demand viewing.
Video presentations from the International MND/ALS Symposium, 7 December 2017, are now available to watch online.
Scientific Update, Dr Jonathan Glass
Our other picks for most interesting presentations are:
At the 2016 annual meeting of the International Alliance for ALS/MND Associations, Dr David Taylor of ALS Canada gave a comprehensive update about the current state of MND research.
Scientific Update - Dr David Tayor
The videos below were recorded at the MND New South Wales 'Ask the Experts' event in 2015, for people living with MND, their family and friends. They are long, but give a thorough and up-to-date education about what we currently know about MND. If you'd like to learn more about MND, these are worth watching.
About MND - Prof Matthew Kiernan
What’s new in MND Research? Dr Justin Yerbury
Hope, Hype and Reality - Prof Megan Munsie