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
In this issue:
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By October of this year, a small group of New Zealanders living with Motor Neuron Disease will begin their journey as members of the first-ever international phase 3 MND clinical trial to be offered in New Zealand, across multiple locations. The Lighthouse II trial looks at whether human endogenous retroviruses (HERVs) play a role in … Read more
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
Holidays can be an essential way to recharge your batteries, particularly in times of stress or illness. Getting away from your normal environment and routines can really lift flagging spirits. It is possible to travel and have holidays with MND, with a bit of extra research and preparation. Being outside in New Zealand’s beautiful natural … Read more
This report comes from an experienced traveller who has been affected by MND for a number of years, yet has travelled solo, with his motorised wheelchair from the UK to Japan, North America, Europe and Australasia. Travelling alone, while having advanced MND, and flying long distances is perfectly possible given a bit of thought and … Read more