The Muscular Dystrophy Association of NZ

19/08/2026

An important opportunity for the maritime sector to have a say on proposed rule changes.

If these changes affect you or your organisation, take a look and share your feedback with Maritime NZ!

Have your say about major changes to vessel design, construction and equipment rules.
Maritime NZ is proposing important changes to the Maritime Rules for vessel design, construction and equipment. These proposals have been developed with extensive input from people working in the sector and they are now open for public consultation.

The proposed changes are being consulted on as packages, each including four proposed new Rule Parts and the associated maritime transport instruments (MTIs). In total, 15 existing Rule Parts will be reformed through this programme. The proposed new rules and MTIs will come into force at the same time, after all changes have been consulted on.

The proposed changes in package three relate to:
• Survey and Certification
• Lifting Appliances, Loose Gear, and Working Gear
• Accommodation, Access, Escape, and Personal Safety
• Navigation Systems and Equipment.

These documents along with the submission form are available on the Maritime NZ website https://www.maritimenz.govt.nz/about-us/consultations/dce-40-series-package-3

If you have questions or need help, please email [email protected]

18/08/2026

Guess what’s coming…

The green shirts are making a comeback, and something exciting is just around the corner! 💚💪

Any guesses?

Watch this space… 👟

10/08/2026

📢 REMINDER – IBM Webinar this Wednesday!

A reminder to our IBM community that our next online webinar is happening this Wednesday 12th August at 2.00pm via Zoom.

We’ll be joined by the Myositis Discovery Programme for an informative session covering:

🔹 An introduction to the Myositis Discovery Programme – Kelly Beer, Research Nurse
🔹 An update on current IBM research and clinical approaches – Prof Merrilee Needham, Consultant Neurologist
🔹 Exercise in IBM – Ian Cooper, Research Physiotherapist
🔹 Q&A

⏰ Please note the later start time of 2.00pm due to Australian time zones.

💻 Join us on Zoom

We hope to see you online!

03/08/2026

For many people living with a neuromuscular condition, access to the right treatment can mean the difference between maintaining independence and losing it.

Too many Kiwis are missing out on medicines that are available overseas but remain out of reach here in New Zealand.

We encourage our community to learn more about this important campaign and consider adding your voice by signing the open letter. Together, we can advocate for fairer access to the medicines New Zealanders need.

💙 Every voice matters.

28/07/2026

From Diagnosis to Drug Trial: Denise’s Journey with Myotonic Dystrophy

Join us for a special online webinar with MDANZ member Denise Bentall, who will share her personal journey of living with Type 1 Myotonic Dystrophy (DM1).

Denise will talk about her diagnosis, how DM1 began affecting her everyday life, and how becoming involved in research led to the opportunity to take part in a clinical drug trial.

She will also share what the trial process has involved and the positive changes she has experienced since beginning treatment.

This session is open to members living with myotonic dystrophy, along with their families and whānau.

Tuesday 4th August 2026
11.00am
💻 Online via Zoom

Register via email: [email protected]

26/07/2026

This is an important step forward for New Zealanders living with rare disorders and their whānau.

We welcome the publication of the Rare Disorders Strategy Implementation Plan 2026/27 and look forward to seeing meaningful progress toward better, more coordinated support across the health system.

Thank you to Rare Disorders NZ and everyone who has advocated for change. 💙

Rare disorders can be difficult to diagnose and navigate, and many people and whānau experience long and complex journeys to get information, care and support.

The Ministry of Health has published the Rare Disorders Strategy Implementation Plan 2026/27.

The plan sets out practical actions' agencies will take over the next 12 months to help improve support for people and whānau living with rare disorders.

It focuses on areas such as better coordination across agencies, stronger clinical advice, clearer information, improved data, and ongoing involvement from people with lived experience.

It is an important first step under the Aotearoa New Zealand Rare Disorders Strategy 2024–2034, with progress to be reviewed and reported each year.

Find out more on the Ministry of Health website below (link in the comments).

25/07/2026

Reminder: There’s just over a week left to have your say on improvements to Disability Support Services. The consultation closes 31 July 2026.

See below for how to share your feedback!

DSS invites disabled people, families, whānau and carers to help shape further improvements to disability support services.

21/07/2026

Power in the Park 2026 - Register Now!

Come and meet the I.Lead team at Eden Park on Thursday 22 October 2026 for a day of connection, innovation, and inspiration.

Join us as we bring our community together to share ideas, explore new possibilities, and celebrate better outcomes for the people we support.
✅ Free to attend
✅ Complimentary food and refreshments for pre-registered guests
Secure your ticket today via Eventbrite: https://hubs.li/Q04nQHVV0
Learn more: https://hubs.li/Q04nQzKH0

Power in the Park 2026, powered by Permobil NZ, is a free, fun, and fully inclusive community day - everyone is welcome.

19/07/2026

Disability Connect – Enabling Good Lives Awards 2026

Know anyone who deserves a gold medal for Enabling Good Lives? We are incredibly excited to advise that nominations are now open for our inaugural Disability Connect Enabling Good Lives Awards 2026.

These awards celebrate people, organisations, and community groups who are making a real difference for disabled people and their whānau across Auckland.

Award winners will receive a monetary prize and a unique trophy. The awards will be presented at the Transition Expo on 9 September at 10:00am by Paula Tesoriero and Mark Benjamin.

More information on the “Enabling Good Lives Awards’ is at this website link www.disabilityconnect.org.nz

https://docs.google.com/forms/d/e/1FAIpQLSeTzSvLeYVToHafzTNpDXn31wAkqkcOsGKie6ZKHEPJxfPq7A/viewform

We Are An Auckland Disability Information Advisory Service

16/07/2026

Access to the right mobility equipment can make a meaningful difference to independence, participation and quality of life.

It is encouraging to see the Government’s $3.5 million research programme, delivered with Enable New Zealand, exploring the impact of providing high-performance power wheelchairs to people with progressive conditions.

We look forward to seeing the findings and the positive outcomes this research may help create for disabled New Zealanders.

Read more: https://www.beehive.govt.nz/release/power-wheelchairs-open-new-horizons-disabled-kiwis?fbclid=IwY2xjawTFEuhleHRuA2FlbQIxMQBicmlkETF3b09COFhaanVoY01jMHI1c3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHgK0hphxNGgjz_XDKIc7FsKNNqaRBmc4wm19gCEMB2MUdv5CGKz3jCizMq2C_aem_vkRYvZeVRjqH45u9hiPBng

A $3.5 million Government project is aimed at getting 100 people with progressive conditions including Multiple Sclerosis and Cerebral Palsy, into high-performance power wheelchairs.