MND Australia

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MND Australia MND Australia – advancing motor neurone disease care, advocacy and research Since 1983, we have been the voice for the MND community.

MND Australia is the national peak body of state organisations that support those living with and impacted by Motor Neurone Disease (MND). Our national and international networks help increase understanding of the disease and advocate for the needs of those affected. We fund world-class research for better treatments, improved care, and ultimately a cure

MND is a rapidly progressing neurodegenerative disease that impacts people’s ability to move, walk, speak, swallow and breathe. The lifetime risk of developing MND is 1 in 300. Average life expectancy is only 2.5 years from diagnosis.

✨ Happy Allied Health Professionals Day! ✨Today, we're giving a big shout-out to the incredible allied health profession...
14/10/2026

✨ Happy Allied Health Professionals Day! ✨

Today, we're giving a big shout-out to the incredible allied health professionals who make such a difference in the lives of people living with MND.

Allied health professionals play a vital role in multidisciplinary MND care teams, helping people manage symptoms, maintain independence and enjoy the best possible quality of life.

These dedicated professionals include:

💙 Physiotherapists

💙 Occupational therapists

💙 Speech pathologists

💙 Genetic counsellors

💙 Social workers

💙 Dietitians

💙 Psychologists

To all the allied health professionals working alongside people living with MND, their families and carers, thank you for your expertise, compassion and commitment to improving lives.

13/10/2026

Yesterday, MND Australia met with Senator Penny Allman-Payne to discuss urgent issues with the aged care Support at Home program for people with MND.

In addition to the inconsistencies of the automated Integrated Assessment Tool that Penny mentions in her speech to the Senate, we highlighted three other issues, including:

• Package funding amounts falling far short of what people need to cover their care needs

• Non-invasive ventilation (NIV) is not covered by aged care, nor is it available from any other source

• Unregulated aged care provider costs are significantly higher than those for the NDIS

The power of lived experience storytelling was on full display at the National Press Club last week.In a powerful addres...
12/10/2026

The power of lived experience storytelling was on full display at the National Press Club last week.

In a powerful address, Chair of Go Gentle Australia Andrew Denton highlighted the ongoing barriers to accessing voluntary assisted dying (VAD), sharing the deeply personal stories of three MND Australia National Lived Experience Network members – Anthea, Nicole and Renee (pictured), who were all in attendance.

Anthea's husband Jason accessed VAD surrounded by family. Nicole's stepfather Shane faced distressing journeys to attend VAD appointments as his MND progressed. Renee's father Robert was denied access to VAD by his care provider and died before alternative arrangements could be made.

We are incredibly grateful to Anthea, Nicole and Renee for so generously sharing their experiences, honouring their loved ones and helping to advocate for change.

Their stories are a powerful reminder of why lived experience voices must be at the heart of the conversations and decisions that affect people living with MND and their families.

💙 Want to learn how to share your own story to create change?

Join MND Australia's free Lived Experience Storytelling Workshop this Wednesday 14 October to explore practical tools for sharing your experiences and advocating for yourself and others.

Register here: https://us06web.zoom.us/webinar/register/WN_wt3X-QOAT6y7pF0jN_qedQ #/registration
Watch the NPC Address: https://iview.abc.net.au/show/national-press-club-address/series/0/video/NC2611C037S00

10/10/2026

At our recent National MND Conference, Helen O'Neill shared a deeply personal glimpse into life as an MND carer through her moving presentation, Diary of an MND Carer.

Her words capture the relentless demands of caring, the exhaustion of sleepless nights, and the quiet moments of love and connection that exist alongside them.

As National Carers Week begins, we want to acknowledge the extraordinary contribution of family members, friends and loved ones who care for people living with MND.

Too often, their work happens behind closed doors, unseen and unrecognised. But their stories deserve to be heard, and their needs deserve to be supported.

Thank you Helen for sharing your story so generously and giving voice to the experiences of so many MND carers across Australia.

To every MND carer: we see you, we thank you, and we stand with you. 💙

Living with MND brings constant challenges and changes. These can bring up a range of emotions – for you and people clos...
09/10/2026

Living with MND brings constant challenges and changes. These can bring up a range of emotions – for you and people close to you.

Feeling sad, angry, worried or frustrated is normal.

Talking about your feelings and planning for support can help protect your mental health and your relationships.

There are different ways to cope with challenging emotions. Here are a few ideas that may help:

🔹 Be kind to yourself – remember everyone is different and there is no right or wrong way to feel.

🔹 Ask for help – this doesn’t make you weak; it means you are human.

🔹 Remember emotions come and go. Give yourself permission to cry, but also to hope, laugh and make new and special memories with family and friends.

🔹 Connect with your peers for support – talking to people who understand MND can help you feel less isolated.

To find out more, visit mndaustralia.org.au/mental-health

For people living with MND, flying can present significant challenges. From travelling with essential medical equipment ...
08/10/2026

For people living with MND, flying can present significant challenges. From travelling with essential medical equipment to navigating airport security, boarding and accessing bathrooms.

MND Australia has made a submission to the Federal Government’s consultation on new Aviation Disability Standards, informed by the experiences of our Lived Experience Network.

We're calling for better coordination between airlines and airports, safer boarding processes, improved accessibility and greater understanding of individual needs.

People living with MND shouldn't have to fight for accessible air travel.

Read our full submission:https://www.mndaustralia.org.au/media/t0bctodp/mnda-submission-aviation-disability-standards-1026.pdf

📸 Pictured: MND Australia Ambassador Pete Russo

Tofersen (QALSODY®), a treatment for ALS caused by a change in the SOD1 gene, is now available through the Pharmaceutica...
07/10/2026

Tofersen (QALSODY®), a treatment for ALS caused by a change in the SOD1 gene, is now available through the Pharmaceutical Benefits Scheme (PBS) for eligible people.

Around 2% of people with ALS have a change in the SOD1 gene. A genetic test is needed to confirm this before treatment.

Evidence shows tofersen can slow the progression of SOD1-ALS. Research into its longer-term benefits is continuing.

Talk to your neurologist or MND clinic to find out if tofersen may be suitable for you.

Learn more about tofersen, genetic testing and PBS access: https://www.mndaustralia.org.au/info/living-with-mnd/medication-for-mnd/

Reminder: Storytelling webinar next Weds 14 Oct AEDT!Register via Zoom here: https://us06web.zoom.us/webinar/register/W...
07/10/2026

Reminder: Storytelling webinar next Weds 14 Oct AEDT!

Register via Zoom here: https://us06web.zoom.us/webinar/register/WN_wt3X-QOAT6y7pF0jN_qedQ

This interactive workshop is for people with lived experience of MND. It will explore how you can use your stories to communicate what matters to you and advocate for yourself or others.

Storytelling is a powerful communication tool. In a health setting, telling stories can also help get your needs met, help family and friends understand your experience, raise awareness and advocate for change.

In the webinar, you’ll learn practical ways to:

🔹 be clear about why you are sharing your story and what you want people to understand

🔹 use simple storytelling tools and communication techniques to shape your story for different people, situations and purposes

🔹 decide what you are comfortable sharing, and what you want to keep private.

The workshop is a chance to connect, reflect and explore ideas in a supportive setting.

Weds 14 October AEDT
Register via Zoom here: https://us06web.zoom.us/webinar/register/WN_wt3X-QOAT6y7pF0jN_qedQ

The workshop will be led by Kate May from Common Cause. Kate is a lived-experience advocate in women’s health, chronic pain and disability, with experience helping people to use storytelling to share their perspectives and advocate for change.

06/10/2026

"Research gives us hope for a cure. Care gives us possibilities today."

Thank you to Leanne Sklavenitis for making this video for our National MND Conference last month and inviting people to see the possibilities created by care
💙

Something special is coming 🏹 Last night saw an 80,000 strong NRL Grand Final crowd rally behind both Jai Arrow and Nath...
05/10/2026

Something special is coming 🏹

Last night saw an 80,000 strong NRL Grand Final crowd rally behind both Jai Arrow and Nathan Charles, sending a powerful message of cross-code support for people living with MND.

Thanks to the kind efforts of Berina Arrow and Jai, the televised tribute featured the MND Australia logo with a QR code to our website. We cannot thank them enough for using this incredible moment to shine a light on our work.

But this is only the beginning. Berina and Jai have promised to keep fighting - not just for their family, but every family impacted by MND. Together with MND Australia, they've been quietly working on something special close to their hearts. Stay tuned!

Address

PO Box 57, Woden
Canberra, ACT
2606

Telephone

+61282874980

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