It is set to be a big year at MND NSW as we continue to support people living with MND to access the best possible care and support.

We are focused on the objectives of our 2022-26 Strategic Plan -

  • Delivering accessible, equitable and inclusive care and support.
  • Technology and innovation that supports people living with MND.
  • Growing MND awareness, advocacy and research.
  • Remaining sustainable so we can continue to provide support and care into the future until we find a cure.

One-Off Specialised Equipment Library

In early January we launched the One-Off Specialised Equipment Library for FlexEquip NDIS bundle participants. The library is made up of a variety of one-off items that have been donated to FlexEquip. Many items are high cost and have additional non-standard features.

We are excited to launch this library as the new equipment has been repurposed to meet the needs of most people living with MND, will reduce landfill and provides greater value within the NDIS FlexEquip bundle.

Check out the library on the FlexEquip website.

New Research Partnership

Experiences of accessing specialised MND healthcare in NSW 

A new research project we are undertaking in partnership with Concord Repatriation General Hospital, St Joseph’s Hospital in Auburn, and the University of NSW will soon be underway.

It is an exciting and important opportunity to understand experiences of access to specialised MND healthcare in NSW.  As part of the project’s progress, we will be inviting people to complete a survey in February 2023, please look out for an email from us in the coming weeks. Participation is voluntary.

We encourage everyone to have their say and take part in this important initiative.

Support Groups

This year we aim to run around 55 support groups across NSW and the ACT. Most groups will occur face-to-face with some online. They bring together people living with MND to share experiences.

Registrations are open for support groups occurring in February, find out more on our events page.

Education

We are excited to be working on some new education resources that will be included to the MND Education Hub. The Hub has e-learning modules and webinars and has information for a range of audiences including people living with MND their families and for health professionals.

The educaiton team are hositng an online MND Aware workshop for health and community care proffessionals on 23 May 2023. Find out more on our events page

Visit the MND Hub to find out more.

Carer Support

This year we offer carers of people living with MND a range of supports, these include:

  • The new carer-to-carer program where an experienced carer coaches and supports a new carer.
  • Carer Kitchen Table Support Groups to share experiences and connect with one another.
  • Youth Hub for young carers.
  • And many more initiatives.

Contact the carer and education team for more informaiton This email address is being protected from spambots. You need JavaScript enabled to view it.

MND Info Line – 1800 777 175

The MND NSW Info Line is available Monday to Friday, 9am to 4:30pm and supports access to MND NSW services and provides information about MND to anyone in the community.

MND Advisors

Providing information about MND and supporting links to government and community services.

NDIS Support Coordinators

Assisting with the implementation of an NDIS plan for eligible participants.

Fundraising and MND Awareness

Check out the events page for information about our Walk to d’ Feet MND events happening across NSW and the ACT and the Never Give Up Three Peaks Challenge an epic day trek at the Australian Alps.

Thank you!

Supporters of MND NSW are vital in ensuring we can continue to provide care and support to people living with MND, their families and health professionals.

Thank you for supporting us and we look forward to a busy year in the fight against MND and the search for a cure.

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