MG VIC Launch

We’re excited to introduce MG Vic, Victoria’s association, to support people across the state living with Myasthenia Gravis.

MG Vic will amplify the voices of patients, families and carers through awareness and education.

We will connect the MG community and beyond, with local events in your area, as well as raising awareness. We are also planning educational forums in person and online.

Right now, we’re looking for people to join our committee. If you’re interested, please tell us about your experience with MG and how you believe you could assist plus your work background skills – even a CV if you like.

Submissions are due on Sunday 23.11.2025. Please send to info@mgvic.org

So you can stay up to date on everything, like the upcoming launch of MG Vic’s new website, as well as our Morning Teas, where you’ll get the chance to tell us what you want MG Vic to be about, please follow our Facebook page: https://www.facebook.com/share/g/1FrJDSTP26/?mibextid=wwXIfr

Membership will be available on the website very soon. 

For further information contact Catherine Bergin – President MG Vic 0418 563 557

 

 

Register now! Multi-stakeholder webinar on Myasthenia research updates

The Myasthenia Alliance Australia is partnering with OPTIMAL NHMRC Centre for Research Excellence in improving immunoglobulin use, and we invite you to join our upcoming webinar on Myasthenia Gravis.  

Date: Monday 24th November 2025 

Time: 3-4:30pm AEDT  

 

This session will bring together clinicians, researchers, and people with lived experience to discuss current understanding of Myasthenia Gravis, insights from national research on immunoglobulin therapy in Myasthenia Gravis, and how patient preferences can help shape future care.  

This is a great example of different stakeholders coming together to provide resources and information for a wide audience, while also raising awareness about Myasthenia. As a patient, you can learn more about current research and how it has an impact on our healthcare and the therapies we can access.  

For more information and to register, scan the QR code on the flyer or click here. 

Webinar Program

Please feel free to share this invitation with your networks or anyone who may be interested – all are welcome to attend. 

We look forward to your participation! 

EXPERT INSIGHTS: Myasthenia Gravis and symptom assessment tools to improve outcomes

EXPERT INSIGHTS: Myasthenia Gravis and symptom assessment tools to improve outcomes

How do we truly understand what life is like for someone living with myasthenia gravis?

In this insightful webinar, Dr Carlo Antozzi, Senior Neurologist and Head of the Neuroimmunology and Neuromuscular Diseases Unit at the Besta Neurological Institute in Milan, takes us inside the evolving world of MG care – one where patients’ voices are finally being heard as loudly as the data.

Dr Antozzi’s warmth, expertise, and more than 30 years of clinical experience make this a must-watch conversation for anyone wanting to understand the human side of myasthenia gravis.

 

Watch the Webinar Below

 

A Shift in MG Care: Listening Beyond the Symptoms

Dr Antozzi reflects on how far the field has come since he saw his first patient in 1982. Then, treatment was focused almost entirely on symptom control. Today, it’s about partnership, recognising that patients’ lived experiences hold as much value as clinical results.

He explains that the most effective management now includes:

  • Patient-reported outcomes alongside physician assessments
  • Consistent use of scales such as MG-ADL (Activities of Daily Living)
  • Regular conversations about how the condition impacts daily life, mental health, work, and relationships

“We learned that the patient must be included in the therapeutic path,” Dr Antozzi shares. “It’s not only about prescribing drugs – we must think about the patient in a holistic way.”

 

The Power of the MG-ADL

One of the most practical shifts in modern MG care is the use of the MG-ADL scale – a simple eight-item questionnaire covering speech, swallowing, breathing, mobility, and vision.

It gives both doctors and patients a shared language for tracking change over time.

Importantly, it can be done in person or remotely, making it easier for patients to stay connected with their care teams between appointments.
Dr Antozzi emphasises that this scale is now used not only in clinical trials but also in everyday outpatient clinics around the world.

 

Quality of Life: The New Standard

In the past, “success” in MG treatment meant symptom reduction. Now, the focus is broader – improving quality of life.
This includes sleep, emotional wellbeing, energy, and social connection.

Dr Antozzi notes that recent studies show MG affects far more than muscle strength: it can limit work, family life, and the ability to plan ahead.

He also highlights the growing awareness of caregiver impact. Many carers dedicate over 50 hours a week to supporting loved ones – effectively taking on a second job.

Why This Conversation Matters

Dr Antozzi’s insights remind us that research and empathy must move hand-in-hand.
His message is clear: the best outcomes come when patients and clinicians work together – sharing decisions, tracking progress, and never losing sight of the person behind the diagnosis.

Whether you’re a healthcare professional, patient, or caregiver, this webinar offers a grounded, compassionate view of what MG management looks like today – and where it’s heading next.

 

Closing Thought

Every conversation like this one helps build a future where MG care is more informed, inclusive, and human.
We invite you to watch, learn, and share this webinar with anyone touched by myasthenia gravis.

 

FINAL REMINDER – Don’t forget to register for MAA’s Nursing Excellence Webinar

 

 

Myasthenia Alliance Australia (MAA) are delighted to invite you to an informative webinar with Nurse Practitioner Jenny Stofmeel.

️ Tuesday 28th October 2025

⏰ 5:30pm – 6:30pm AEST

Nurse Stofmeel will share valuable insights on managing the day-to-day challenges of rare neurological conditions, and accessing the support you need, as well as the important role nurses play in coordinating care as part of a wider medical team.

There will also be the opportunity to ask Nurse Stofmeel your questions during the Q&A at the end of the session, via the chat function.

Register your attendance today: https://zoom.us/webinar/register/WN_nXOuIOhdQbanJzC1IlJFWg#/registration

For those unable to attend the live webinar, a recording will be shared on the Myasthenia Alliance Australia website after the session (https://myastheniaalliance.org.au/ )

Don’t miss your chance to join us – MAA’s Nursing Excellence Webinar

 

 

 

 

Myasthenia Alliance Australia (MAA) are delighted to invite you to an informative webinar with Nurse Practitioner Jenny Stofmeel.

️ Tuesday 28th October 2025

⏰ 5:30pm – 6:30pm AEST

Nurse Stofmeel will share valuable insights on managing the day-to-day challenges of rare neurological conditions, and accessing the support you need, as well as the important role nurses play in coordinating care as part of a wider medical team.

There will also be the opportunity to ask Nurse Stofmeel your questions during the Q&A at the end of the session, via the chat function.

Register your attendance today: https://zoom.us/webinar/register/WN_nXOuIOhdQbanJzC1IlJFWg#/registration

For those unable to attend the live webinar, a recording will be shared on the Myasthenia Alliance Australia website after the session (https://myastheniaalliance.org.au/ )

Don’t forget to register for MAA’s Nursing Excellence Webinar

 

Myasthenia Alliance Australia (MAA) are delighted to invite you to an informative webinar with Nurse Practitioner Jenny Stofmeel.

️ Tuesday 28th October 2025

⏰ 5:30pm – 6:30pm AEST

Nurse Stofmeel will share valuable insights on managing the day-to-day challenges of rare neurological conditions, and accessing the support you need, as well as the important role nurses play in coordinating care as part of a wider medical team.

There will also be the opportunity to ask Nurse Stofmeel your questions during the Q&A at the end of the session, via the chat function.

Register your attendance today: https://zoom.us/webinar/register/WN_nXOuIOhdQbanJzC1IlJFWg#/registration

For those unable to attend the live webinar, a recording will be shared on the Myasthenia Alliance Australia website after the session (https://myastheniaalliance.org.au/ )

NURSING EXCELLENCE and the vital role of nurses in MG care

Myasthenia Alliance Australia (MAA) are delighted to invite you to an informative webinar with Nurse Practitioner Jenny Stofmeel.

️ Tuesday 28th October 2025

⏰ 5:30pm – 6:30pm AEST

Nurse Stofmeel will share valuable insights on managing the day-to-day challenges of rare neurological conditions, and accessing the support you need, as well as the important role nurses play in coordinating care as part of a wider medical team.

There will also be the opportunity to ask Nurse Stofmeel your questions during the Q&A at the end of the session, via the chat function.

Register your attendance today: https://zoom.us/webinar/register/WN_nXOuIOhdQbanJzC1IlJFWg#/registration

For those unable to attend the live webinar, a recording will be shared on the Myasthenia Alliance Australia website after the session (https://myastheniaalliance.org.au/ )

Congenital Myasthenia Syndrome (CMS) patients – please complete this MAA survey!

The MAA would like to hear from ALL Australians diagnosed with CMS. We need to capture your numbers (parents/guardians can respond on behalf of children). We also want to learn about your experiences here in Australia regarding accessing Ruzurgi/Amifampridine/3,4-DAP as a treatment option.

The supplier of Ruzurgi is working towards achieving PBS funding for CMS patients. This will be done via a Repurposing Application. The MAA have previously been successful with such an application, and we are keen to assist on this occasion. The MAA firmly believe that “equal access to treatments for Australians” should mean that CMS patients have funded access to this treatment should they want it.

In order to approach the Health Department with an appeal we need to present data about the current situation and show why this is creating an unmet need.

If you are diagnosed with CMS, or can pass this information onto anyone who is diagnosed with the condition, we need you to complete this short survey.

COMPLETE THE SURVEY HERE >>

There is an opportunity at the completion of the survey to leave your contact details should you be willing to provide additional information, but this is optional.

The MAA express our sincere appreciation to everyone who completes the survey. We are always keen to support our ‘rare’ community. Your assistance will be a great help in this endeavour, and we thank the company for taking this important step.

Please call 1800 802 568 or email support@myastheniaalliance.org.au if you require additional information.

Why volunteer? Experiencing the MG Patient Advocacy Organisation (PAO) Summit is just one example!

In May this year, people who are both a patient and patient advocate or representative came together in Den Haag, in The Netherlands. We came from about 15 different countries. I had not met one of them before arriving there, and yet I felt immediately at home.

Although we come from different countries with different languages, cultures and healthcare systems, we face similar challenges as MG patients with the multidimensional impacts and the overall burden of MG, and as PAOs, including aiming for equitable and timely access to treatments. Like us in Australia, many of the patient organisations in Europe are also run by patients for patients, and the work we do is making a positive difference for MG patients.

For nearly 2 days, we discussed and agreed on some of the most pressing unmet needs within MG patient education and how we can work together on actions. We shared ideas for educating and empowering patients including tools, resources and apps. We also considered how to ensure we (patients) are speaking the same language as clinicians, including how to best discuss our concerns and key questions to ask, and how we can better integrate allied healthcare to create a holistic landscape for our care.

Some of these areas are already included on the MAA website: https://myastheniaalliance.org.au. And we are always working to consider how we can best support our patient community in Australia. The ideas are many, but we do need people to help make them a reality. So, I strongly encourage you to think about volunteering your time and skills with us, where and when you can. This could be helping out on one project or just one hour a week, it is up to you.

Why volunteer… volunteering is often about helping others, and on top of this, volunteering as a patient with lived experience is meaningful and can give you a real sense of purpose.

Personally, having been diagnosed at 8 years old, Myasthenia Gravis is with me for most of my life. I faced quite a few challenges with my MG as a child, a teenager and then young adult, but ultimately, I had a positive experience in achieving a stable condition and living well with my MG. I first got involved as a volunteer with the hope that this can happen for all MG patients.

In the 5 and a half years I have been volunteering with MAA and MGNSW, I have had the opportunity to not only work with a dedicated team of fellow MG patients, but I have also had wonderful opportunities to learn, develop my own skills and knowledge, and engage in meaningful work, to ultimately improve what it is to live with MG.

Reflecting on being a MAA board member, I realise I have undertaken quite an amazing range of activities:

  • Facilitated multiple research projects and studies, and I value this because building our evidence base, especially with patient reported outcomes, is so important for the patient voice.
  • Attended many insightful webinars and collaborative meetings with stakeholders, including clinicians, and I have learnt a lot about the disease I live with.
  • Drafted submissions for a range of national health and medicines policies and I feel that this is really an opportunity to play a part in the bigger picture.
  • Contributed to organising and coordinating the national MG patient conference in 2023 and national awareness campaigns.
  • Attended conferences and events in Sydney, Canberra, Brisbane and Adelaide, and this year, we took our work internationally to the MGFA PAO Summit and International Conference in The Hague, The Netherlands.
  • And I have the absolute pleasure of meeting and speaking with fellow MG patients, listening to your stories and understanding what having MG means for you.

There are already more activities in the pipeline before the end of this year! So, if you’d like to have a chat about being involved, please reach out to us today at support@myastheniaalliance.org.au

Finally, I wish to acknowledge the financial support of the Myasthenia Gravis Foundation of America (MGFA) and their sponsors, which made it possible for me to participate in the amazing PAO summit and international MG conference on behalf of the Australian MG patient community.

Natalie Windle

MAA Secretary/MGNSW President

The MAA is fully volunteer run and is solely donation funded. Please consider donating. It can be done via the website https://myastheniaalliance.org.au/

You are not alone in your experiences!

 

The MAA captured some invaluable information about our community as a part of the webinar hosted in January 2025. The webinar heard from leading Specialists who explained the new treatments which are currently seeking PBS funding. This webinar can be viewed here Expanding Treatment Options – January 2025 – Myasthenia Alliance Australia.

The information collected was incorporated into the MAA Submission to the PBAC. The data helped us tell the Australian Patient story. We share this data now for your interest.

The MAA thank Argenx for providing financial support in bringing about this educational event.

EXPERT INSIGHTS: Myasthenia Gravis and symptom assessment tools to improve outcomes – INVITATION

The Myasthenia Alliance Australia is delighted to announce an in-person event to be hosted in Brisbane on Monday, September 15th, from 12 midday.

We thank Argenx for supporting this opportunity to hear from Dr Carlo Antozzi speaking on “Myasthenia Gravis and symptom assessment tools to improve outcomes.”

This is a significant educational opportunity for patients as well as a community time to interact with other MG patients. Dr Antozzi will take questions.

Please consider this invitation fully and respond by scanning the QR Code in the invitation.

The presentation only will be recorded and made available via the MAA website.

Click here to register today

Myasthenia Gravis and symptom assessment tools to improve outcomes

Conversations continue for access to new treatments

We appreciate that it has been a couple of months since the Pharmaceutical Benefits Advisory Committee (PBAC) recommended that 4 new treatments for AChR+ generalised MG patients be listed on the Pharmaceutical Benefits Scheme (PBS)… In this time, the MAA has continued conversations with clinicians, government, and industry stakeholders to make sure we understand the progress of these recommendations, and we continue to advocate for improved access to treatments.

The Public Summary Documents (PSDs) for the PBC March 2025 meeting were published online on 4th July 2025. HOWEVER, PSDs for the 4 treatments for gMG patients are still pending publication.

This means that more discussion is required, and we appreciate the work being done by the department and pharmaceutical companies. While Australia has a rigorous process for approving medications and treatments on the PBS, the key point for us here is that a commitment remains from all stakeholders and things are still moving.

The MAA remains committed to ensuring that MG patients in Australia have equitable and timely access to the best available treatment that most benefits them. We remind stakeholders that timing is important to us and we do not wish to delay access unnecessarily.

We also reiterate the impact of our submissions to PBAC earlier this year, which established the high unmet clinical needs of our patient community. The MAA maintains that this demonstrates a clear need for access to treatment options to improve the quality of life for all MG patients.

We understand that some patients are accessing these new treatments via Early Access Programs (EAPs). The MAA and State Associations would still be glad to receive feedback from people who are receiving these treatments via EAPs so please reach out by emailing info@mgaq.org.au or info@myasthenia.org.au, or calling 1800 802 568.

We will keep you updated on the progress of these new treatments being available on the PBS, including when the PSDs are published. Please check that you’re subscribed to updates via the MAA website.

Natalie Windle MAA Secretary

MGBase launch paper has been published and is online!

MGBase Launch Paper Now Published

The MGBase registry launch paper is a landmark initiative bringing together deidentified clinical data from over 1,200 MG patients across 15 countries. Built on the proven MSBase platform, this collaborative research tool enables long-term insights into treatment outcomes, disease progression, and global variations in care. Backed by Myasthenia Alliance Australia, MGBase is helping researchers and clinicians worldwide drive evidence-based improvements for people living with MG.

Explore the MGBase Launch Paper:

 

How Australians living with Myasthenia Gravis are shaping the future of MG treatment decisions

 

The VALUE-MG research team have provided an update on an important co-designed study that is looking at what people with MG value most when it comes to treatments.

Thank you to all MG patients who have contributed to this research so far. 

Study Update:

How Australians living with Myasthenia Gravis are shaping the future of MG treatment decisions

Our research team at Monash University has been working on a new survey to understand what people with MG value most when it comes to treatments. This type of research helps inform how new treatments are funded and delivered – and this time, it’s being co-designed with patients. Why? Because who better to guide research than those who live with MG every day?

What’s the research about?

The team is developing a Discrete Choice Experiment (DCE) – a type of survey that presents people with real-world scenarios along with different treatment options and asks them to choose their preferred one. These options differ in features such as treatment duration side effects, or how it is administered. The results help researchers and policymakers understand what trade-offs people are willing to make and what drives decision-making.

How the MG community helped

In mid-2024, 19 people with MG from across Australia joined online workshops to co-design the survey.

Over 8 sessions, they:

  •  Identified the most important features of MG treatments
  •  Helped refine scenario descriptions
  •  Suggested better wording for the final survey

The sessions focused on three types of treatment experiences:

  • Mild flare-ups
  • Severe MG exacerbations (crisis)
  • Long-term maintenance treatment

What did patients say?

Effectiveness & Duration of Effectiveness

  • Efficiency is particularly crucial during exacerbations.
  • Duration of effectiveness is more important for patients receiving maintenance treatment.

Time matters

  • Travel time to hospital
  • Time spent in hospital
  • Duration of the treatment

Side effects matter

  • Especially gastrointestinal issues (e.g., nausea, diarrhea)
  • Other commonly mentioned side effects included poor sleep, mood changes, and mental health impacts, often linked to steroid use. While some risks, like weight gain, blood clotting, and skin cancer, were noted, their importance varied depending on the severity of the treatment scenario.

Cost? Less important to patients, but important to government, so still included

  • Cost to patients and the government were consistently ranked lower by patients.
  • The research team still decided to include cost in the future survey because it is important to government and would likely be very relevant for patients if the government choose not to subsidise certain expensive treatments.

What didn’t make the final cut?

Some treatment features were ranked very highly but were excluded from the future survey:

  • “Recommended by my neurologist”
  • “Healthcare worker knowledge of the treatment”

These came up often in discussions, but were excluded for the following reasons:

  • “Recommended by my neurologist” reflects a clinician’s view, not the patient’s personal preference
  • “Healthcare worker knowledge” was too broad – people were referring to general MG knowledge across healthcare professions rather than knowledge about a specific treatment

Even though they weren’t included in the survey, they are still important and will be considered when we interpret the final results.

What happens next?

We are working towards finalising the survey, and it will be pilot tested soon. The findings will:

  • Help improve shared decision-making between patients and clinicians
  • Support evidence-based funding of MG treatments
  • Promote patient-centred care in rare disease treatment

Thank you

We want to thank the amazing community members who contributed to this project.
Your voices are helping shape the future of MG care in Australia.

Want to get involved in future MG research?
Contact Dr Gozde Aydin at value.ig@monash.edu