Cover Winter Newsletter 2022

In this issue:

  • Celebrate our fundraising heroes, including the 2022 MND Ice Bucket Challenge.
  • Learn more about international MND research trial – Lighthouse II Phase 3.
  • Meet the new staff joining the battle against MND.  
  • Get to know our Support Advisors – meet Megan Te Boekhorst.
  • Feel inspired by stories from across our community. 
  • From everyone at MND New Zealand, take care and stay in touch. 

Read online here


MND New Zealand is delighted to announce the appointment of Scott Arrol as the new Chief Executive. Scott will be joining the team on the 14th of March 2022. Scott has significant experience in the health and not-for-profit sectors, most recently as the Chief Executive for Dementia New Zealand. Prior to this, Scott was the … Read more

Following the recent resignation of our Chair Greg Horton, we are delighted to announce the appointment of Natalie Thain as interim Chair to our AGM on 30th October. Natalie brings considerable governance experience at board level in a range of organisations, including large private sector organisations; listed companies; local, central, and regional government agencies; non-profits; … Read more

The end of the tax year is almost here! As we are a registered charity (The Motor Neurone Disease Association of New Zealand Incorporated – Registration Number: CC35320), if you donated to MND New Zealand during the 2020 tax year (ending on 31st March 2021), you could be eligible for a tax refund. We estimate … Read more

A big thank you to our Foundation Corporate Sponsor Fulton Hogan as we celebrate the one-year anniversary of our partnership and The Fulton Hogan MND New Zealand Support Fund. It takes a team to live with the impacts of MND and we are so proud to have Fulton Hogan as part of the team making … Read more

It takes a team to live with the impacts of MND. Every member of the community plays a valuable part; friends and whānau, health professionals and researchers, volunteers and supporters. As our Foundation Corporate Sponsor, we’re proud to have Fulton Hogan as part of the team making a difference by supporting our vision: Together, we provide … Read more

The David Oliver Beacon Award is an annual award that honours, acknowledges and celebrates those who have made a significant contribution to the MND community.  The theme for 2019 is: Acknowledging an individual or team making a difference on the journey of people or families living with motor neurone disease.  We’re delighted to announce that this … Read more

We’re proud to share the findings of our MND Community Survey, and appreciate the time and effort of those who participated. We know you’ll be keen to see the results, which focused on six key areas: Supporting people with MND Needs of people with MND Connecting with MND New Zealand – people with MND & … Read more

We have been closely following the Medsafe consultation on the changes to the prescribing restrictions of riluzole (trade name ‘Rilutek’). In April we raised concerns that some of our clients had been prescribed riluzole by their general practitioner. Under the Medicines Act 1981, Rilutek can only be prescribed by specialist physicians who care for patients with … Read more

Research is a vital key that will one day help to unlock a cure for MND. The Centre for Brain Research at Auckland University is currently looking for volunteers to help with a study into the function of the blood-brain barrier in Motor neurone disease, specifically, amyotrophic lateral sclerosis (ALS). Led by Dr Emma Scotter … Read more

MND New Zealand supports people living with Motor Neurone Disease, their carers, families and whanau, and the Health Professionals who work with them throughout New Zealand. We’re currently on the lookout for new members to join our National Council which meets five times a year to help govern and set the strategic direction for our … Read more