Mnd Website News Featherbed Tales Promo

With Christmas just around the corner MND New Zealand is pleased to offer free access to the Featherbed Tales online talking e-books and greeting card service. The web-based platform allows people with MND and their family to quickly and easily record (and re-record!) audio to play alongside the pages of illustrated digital story books, nursery … Read more

Mnd Webinar 81122 Plain

Join us for this inaugural webinar in the newly developed MND New Zealand Community Forum where leading researchers and neurological practitioners will provide an update on key areas of motor neurone disease research happening on both sides of the Tasman. Register for the MND Community Forum Webinar – 8 November 2022 Registration to this webinar … Read more

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

Summary of study provided by lead investigator Paige Thomas (PhD); Rose Centre for Stroke Recovery and Research, Department of Communication Disorders, University of Canterbury, Christchurch Summary of study provided by lead investigator Paige Thomas (PhD); Rose Centre for Stroke Recovery and Research, Department of Communication Disorders, University of Canterbury, Christchurch For individuals with MND swallowing … Read more

Yesterday the Government announced changes to Funded Family Care, designed to make things more equitable. Here’s a brief overview of what’s changing: From 14 April 2020, pay rates for family carers will increase from the minimum wage of $20.50 to $25.50 per hour, which will make a significant difference financially. Carer eligibility is being expanded … Read more

Living with MND is incredibly challenging, and providing practical support to people living with MND is very important to us. With this in mind – we’re delighted to let you know that in conjunction with Corporate Sponsor, Fulton Hogan, we’ve just launched the Fulton Hogan MND New Zealand Support Fund. The fund has been set … Read more

West Coast woman Samarra Wright is one of three people in her family currently living with MND .The SOD1 Gene responsible for familial MND is prevalent in Samarra’s family – 32 of her family members have been identified as carrying the gene. Samarra along with her husband and children recently worked with Attitude TV, creating … Read more

Following our 3rd April article, ‘Prescribing of Rilutek (Riluzole) – What you need to know’, we would like to update you on current progress. Recently it has come to our attention that some of our clients have been prescribed the drug Riluzole (trade name “Rilutek”) by their General Practitioner. Under the Medicines Act 1981, Rilutek can … Read more

Paul Manning knows first-hand the effects of opiate-based pain killers. Having experienced chronic pain for over 15 years, he relied on his doctor and pharmacist to help him with pain management. Paul then found out the opiate-based pain killers had burned a hole in his stomach. “I thought there must be a more natural way to manage … Read more

A recent report surveying over 900 affected families and care organisations about the carer laws has been released with an overwhelming agreement for better pay, removal of the paid 40-hour- a-week cap and better rights for carers. The unpaid work of carers has an annual economic value of more than $7 billion NZD, making the … Read more

Claire Reilly

MND Community & Research Advisor Dr. Claire Reilly explains best practice when being prescribed Rilutek (Riluzole). Riluzole is the only drug funded for the treatment of MND in New Zealand. Recently it has come to our attention that some of our clients have been prescribed the drug Riluzole (trade name “Rilutek”) by their general practitioner. … Read more