Webinars & Conferences
MND New Zealand Community Forum | 8 November 2022
November saw the inaugural webinar in the newly formed Community Forum webinar series from MND New Zealand, with this edition providing an update on key areas of MND research happening on both sides of the Tasman. This webinar included discussion on drug trials, and also featured the release of the New Zealand MND Best Practice Recommendations, which is the result of 2-years collaborative work by clinicians and others across the country. Speakers included Dr Alan Stanley, Dr Gethin Thomas, and Dr Molly Swanson.
Professor Chris Shaw Inaugural lecture | 17 October 2022
Professor Chris Shaw has been appointed to the Hugh Green Chair in Translational Neuroscience in the Centre for Brain Research at the University of Auckland. The Hugh Green Foundation has generously endowed this Chair in Translational Neuroscience and the Hugh Green Biobank in perpetuity in the Centre for Brain Research.
ALS TDI Summit: Community Updates on Research & Science |14 October 2022
The ALS TDI Summit is a free conference that aims to inform and empower the ALS community by educating attendees about ALS TDI’s latest work to discover and develop effective treatments for ALS. The Summit includes: Presentations on ALS TDI’s current research; Guest presentations from leading experts in ALS research.
5th Annual ALS Research Symposium | 6 – 7 October 2022
This year’s symposium hosted by ALS ONE research team was a robust and informative forum discussing and reviewing current research that is underway across the globe to help uncover therapeutic options leading to an ultimate cure for MND/ALS.
Day one and two included discussions on current state of clinical trials, lessons from TDP43 and related ALS genes, new biomarkers, neurotech, and presentations from industrial speakers including Biogen and Ionis Pharmaceuticals.
Click here to listen to the presentation recordings. The links are located under each talk title/speaker name on the AGENDA tab of the website.
As many as 150 New Zealanders are diagnosed with motor neuron disease (MND) each year. The rate of MND in New Zealand is among the highest in the world, but who develops the disease and why? MND can run in families but is most often diagnosed in people with no family history, who are caught totally unaware.
In this talk, Dr Scotter discusses the factors that increase the risk of developing MND; namely genetics and environmental agents. She also discusses what we know about MND in New Zealand, based on findings from the national genetics study and the programme of human brain tissue research, and put this into context against international findings.
This talk will be of interest to people living with MND, their families and friends, students, clinicians, and anyone who has ever wondered about neurodegeneration or the brain.
Australian & New Zealand MND Symposium|Brisbane, 28 – 30 April 2022
The first Australian and New Zealand MND Research Symposium took place in Brisbane on Thursday 28th and Friday 29th April 2022 with an MND Connect – Research Live session on Saturday 30th April. A small but strong cohort of New Zealand researchers attended in person and participated in many aspects of the event.
Dr Claire Reilly, Dr Emma Scotter, Maize Cao, Miran Mrkela, and Kyrah Thumbadoo kindly shared their take home points from the symposium. Click here to read more.
Recordings of the symposium are now available to watch anytime. To watch, just click on the session that you would like to view. Please note that some presentations have not been included due to commercial and/or confidentiality concerns. Click here to access the recordings.
Dr Natalie Leigh who recently completed her PhD understanding the levels of stigma and psychological distress experienced by individuals with MND.
Dr Alan Stanley presented the New Zealand guidelines for the “Assessment and Management of MND” that have been developed by the MND Clinical Working Group. Alan also discussed an upcoming study investigating the costs associated with caring for people with MND in New Zealand.
Dr Mandy Wilkinson and Justin Jordan, discussed their study on the “role and impact of the MND clinical nurse specialist” and prevalence and incidence of MND in Canterbury.
The International Alliance of ALS / MND Associations| Genetics webinar Series 2021
The International Alliance of ALS/MND have a series of 3 webinars available for viewing now.
- Introduction to ALS/MND Genetics,
- Genetics – Counselling & Testing,
- Ethical Considerations for Genetics.
State of Play MND Research Australia| Webinar Series 2021 / 2022
State of Play is a Webinar Series organised by MND Research Australia. The webinars began in 2020 and are open to all members of the MND Community to provide an introduction to the advancements of the research community in Australia. All State of Plays for 2020-21 and MND Connect: Research Live 2021 are available to watch by clicking here or the link below. The 2022 webinars are added to the webpage following their live recording.
MND Connect Research Live | 6 November 2021
ALS TDI Summit: Community Updates on Research & Science| 5 November 2021
The ALS TDI Summit is a free conference that aims to inform and empower the ALS community by educating attendees about ALS TDI’s latest work to discover and develop effective treatments for ALS. The Summit invites all members of the community to learn about ALS TDI’s cutting-edge approach to ending ALS.
The 2021 Summit recordings are now available on YouTube. Click here to access the links to the presentations.
Therapies in ALS – Symptomatic & Pre-symptomatic Biomarkers for ALS Therapy Development I Webinar 8th September 2021
EverythingALS hosts bi-monthly meetings with world leading researchers investigating ALS & the top clinicians treating patients at ALS Centers of Excellence. You can subscribe for free to EverythingALS YouTube channel to hear all previous recordings.
In the latest meeting Dr. Michael Benatar from University of Miami presents ‘Symptomatic and Pre-Symptomatic Biomarkers for ALS Therapy Development. Click here to view this recording.
Optimising Clinical Trial Design in ALS/MND I Webinar 5th September 2021
The International Alliance of ALS/MND Associations hosts frequent webinars with world leading researchers investigating ALS.
This webinar discusses the history of clinical trials in ALS/MND, which have been fraught with failures. It has not been uncommon for a potential therapy to show promise in Phase 2 trial results, then prove to be ineffective in the subsequent, larger-scale Phase 3 trial. Clinical trials take a considerable amount of time, resources, and funding, and as such there have been numerous efforts in the field of ALS/MND to optimise clinical trials to improve their efficiency and effectiveness. From outcome measures to entry criteria, this webinar explores the lessons learnt from the failed trials of the past, and how those have been integrated in to our optimisation of clinical trials of the future. Click here to view this recording.
Dr Emma Scotter – Head, Motor Neuron Disease Research Lab, University of Auckland, presented an overview of research currently happening in the lab. This includes the nationwide MND genetics study, and insights from her labs program of human brain tissue and cell studies. In particular she described the route from identifying genetic changes in people with MND to understanding whether those gene changes have caused their disease or are simply normal variation. You can read a summary of her presentation here.
Dr Luke McAlary – Illawarra Health and Medical Research institute, University of Wollongong, presented the research his lab are undertaking for SOD1. Dr McAlary and his team are interested in a combination treatment for SOD1-associated MND. They have explored the use of CuATSM and Ebselen as a combination treatment and are looking to expand this when they can return to their lab after lockdown. A summary of his presentation is here.
Dr Paige Thomas – University of Canterbury Rose Centre for Stroke Recovery and Research, presented the findings from her recent study on “The Impact of Swallowing Skill Training Protocol in patients with MND/ALS”. A summary of her presentation is available here.
Dr Michal Boyd – Assoc. Professor & Nurse Practitioner; School of Nursing, University of Auckland discussed her research project investigating end-of-life neurodegenerative care in residential aged care facilities. A summary of her presentation is available here.
Grace Chen – Centre for Public Health Research, Massey University presented progress and results on a New Zealand population-based control study to investigate associations between occupational and environmental exposures and MND. A summary of her presentation is available here.
A palliative care nurse, whose career pivoted to CEO of a national MND association for broader impact. A clinician-scientist who has devoted his career to caring for patients living with ALS/MND, and understanding the triggers that lead to developing the disease. A speech language pathologist providing a voice to ALS patients, even after the disease takes theirs away. An informal conversation with this year’s International Alliance Award winners on their careers, and their contributions to the field of ALS/MND. Click here to view this recording.
Moderator: Calaneet Balas
Carol Birks – Humanitarian Award
Prof. Ammar Al-Chalabi – Forbes Norris Award
John Costello – Allied Health Professional Award
Virtual 31st International Symposium on ALS/MND | 9-11 December, 2020 | online
For the first time, the Symposium was held all online on 9 – 11 December 2020. Over 1,800 delegates registered to hear about progress in research and care including lessons learnt from the COVID-19 pandemic with a range of perspectives, updates on clinical trials, therapeutic strategies, cognitive change, pathogenesis of the disease, and the importance of patient registries and measurements of progression.
• Reporting from the Symposium on the Periodic Table of MND Research 2020.
• Read reports on the MND Research blog.
Inaugural MND New Zealand Research Conference | 9 December, 2019 | Auckland, New Zealand
On Monday 9th December, the MND New Zealand, in conjunction with the MND Research Network, proudly hosted the Inaugural MND New Zealand Research Conference at the Cordis Hotel in Auckland. It was a momentous occasion, gathering 16 speakers, both national and international experts, to discuss the latest updates in MND Research.
The morning’s session focused on understanding and diagnosing MND. We heard from Dr Emma Scotter of the Motor Neuron Disease Lab at Auckland University, fellow kiwi Chris Shaw, now based at King’s College in London and Professor Orla Hardiman from Trinity College in Dublin to name but a few.
In the afternoon, we learned about caring for and supporting those with MND. Speakers included Professor Alister Neill from the University of Otago at Wellington, also a Respiratory & Sleep Physician at Wellington Hospital (CCDHB), Professor Chris McDermott from Sheffield Institute of Translational Neuroscience and Professor David Oliver among others.
A huge thanks goes to all our amazing speakers for taking the time to be with us to share their insights. It was an enlightening day, and attendees left feeling inspired by the information shared and hopeful for the future.
We’d also like to acknowledge the generous financial assistance from the Neurological Foundation, Dairy Goat Cooperative and The Trusts Community Foundation, which helped bring the conference to life.
If you were unable to make it on the day, each session has been captured on video, as well as six minute highlight video if you just want an overview. Click here to check out the videos.
An Update on MND Research Homegrown & Abroad | 21 June, 2019 | Auckland, New Zealand
As part of MND Awareness Week 2019 (17-23 June) and to celebrate Global MND Awareness Day on 21st June, MND New Zealand hosted “An update on MND Research – Homegrown and Abroad”. You can now watch a recording of the event here.
Guest speakers included Professor Chris Shaw, internationally recognised neurologist & MND researcher, with local updates from Dr Emma Scotter & MND Registry Curator Kerry Walker. Research Advisor Claire Reilly also launched the MND NZ Research Strategy, their 3-year plan focusing on cure, care, communication and collaboration. Click here to learn more.