The MAA team are preparing to host a 5th National Patient Conference. This will be a very special event hosted at Rydge’s South Bank in South Brisbane.

Hosting at a function centre allows the MAA to make attending much more achievable for many in our community. Auditorium seating is replaced with round tables, lots of space and this style offers a relaxed method for communicating.

The location is very accessible with all forms of transport available for 50 cents a journey, accommodation is offered on site or nearby and taxis are plentiful. South Bank is a fun and accessible area of Brisbane. The food will be buffet selection with dietary requirements comfortably addressed. Sounds exciting!

Most importantly, the topics will reflect the latest in treatment trends, what might come next and where research is adding great value! Recordings of the presentations will be made available via the website after the event.

Unfortunately, such an upgrade comes at a cost, and places will need to be more limited. The MAA are dependent on sponsorship to achieve this special day.

Ticket prices will be kept very reasonable with additional details to be shared when registrations open. Please consider carefully if you would like to attend so that you are prepared for when registration is opened. Places will go quickly.

Living with myasthenia gravis often means symptoms can change unexpectedly, making it difficult to know when to seek support or start a conversation with your healthcare team.

Myasthenia Alliance Australia (MAA) invites you to join our upcoming webinar:

Speaking Up When Symptoms Change: Knowing When and How to Reach Out to Your Doctor

Presented by neurologist Prof. Anneke Van der Walt, this webinar will explore how to recognise symptom changes associated with MG, reduce uncertainty during symptom fluctuations, and feel more confident speaking up when your health needs change.

Webinar Details

Thursday 4 June 2026
5:30pm–6:30pm AEST
NSW, VIC, QLD, TAS: 5:30pm–6:30pm
SA, NT: 5:00pm–6:00pm
WA: 3:30pm–4:30pm
Registration Link: https://zoom.us/webinar/register/WN_rTzKa6zoTyGttHznwYyNVA

This session forms part of the Your MG Journey, Supported by Shared Care Webinar Series, proudly sponsored by UCB.

About the Speaker

Prof. Anneke Van der Walt is Director of the Multiple Sclerosis and Neuroimmunology Unit and Neuro-ophthalmology Service at Alfred Health in Melbourne, and Chief Operating Officer of the MSBase Foundation. Her work focuses on improving long-term care and outcomes for people living with neurological conditions, including myasthenia gravis.

A live Q&A session will follow the presentation, and a webinar recording will also be made available via the MAA website for those unable to attend live.

We encourage all members of the MG community, including carers and family members, to register and join the discussion.

Register your attendance today.

The generosity already shown through the Art With Heart campaign has been truly inspiring.

Artists, supporters, businesses, and members of the community from across Australia have already donated an incredible range of artworks and items to help raise awareness for myasthenia gravis and support the work of Myasthenia Alliance Australia.

From paintings and photography through to handcrafted pieces, books, textiles, vouchers, and unique creative works, the auction catalogue is already growing into something very special.

But there is still time to be part of it.

📅 Artwork and item donations officially close on 5 June 2026

If you’ve been thinking about contributing, now is the time.

Whether you’re:

• an artist

• a creative

• a business owner

• or simply someone wanting to support a meaningful cause

…your donation can help spark conversations, increase awareness, and directly support advocacy, programs, and future initiatives for people living with myasthenia gravis.

And then comes the exciting part…

🖼️ Bidding opens on 22 June 2026

With such a diverse and talented collection already received, there will be something for everyone to discover and bid on.

We would also like to sincerely thank everyone who has already contributed to the project. Your generosity, creativity, and willingness to stand behind the MG community is helping turn awareness into action.

👉 View the auction catalogue and follow the project here:
Art With Heart Auction

Together, we can continue building awareness, strengthening support, and creating a stronger voice for people living with myasthenia gravis.

#ArtWithHeart #MyastheniaGravis #HealthAwareness #CommunitySupport #CharityAuction #RareDisease #AustralianArtists

Registration Link: https://zoom.us/webinar/register/WN_rTzKa6zoTyGttHznwYyNVA

You are invited to take a look at the draft Framework for Consumer Engagement in Heath Technology Assessment (HTA)and share your feedback directly with the government.

Over the past couple of years, you – the Australian Myasthenia Gravis patient community – have contributed to the HTA process for new and innovative treatments being made available through our Pharmaceutical Benefits Scheme (PBS). Our experiences including challenges or barriers with this process are valuable for the Department of Health as they work to strengthen consumer engagement in HTA.

The Department’s Consumer Evidence and Engagement Unit are dedicated to working with consumers as partners and ensuring that the patient voice is a key part of the decision-making process. Consumer engagement in the HTA process should be consistent, clear, and meaningful. This is your chance to help inform, and improve, the bigger picture for all patients and consumers!

The Framework is a short 3-page document that explains how consumer (patient) engagement happens across HTA processes in Australia. It sets out guiding principles, focus areas, and actions to support better consumer engagement in HTA.

To view the framework and read more, please click here.

The survey is open until Tuesday 26 May 2026 and you can complete it online here.

If you have difficulty responding online, please email  htaconsumerengagement@health.gov.au

Please note that this survey is not run by the MAA, but we encourage you to share your feedback with government if you would like to, especially if you recently made a submission to the Pharmaceutical Benefits Advisory Committee (PBAC) for new MG treatments.

For those who missed out, the video below is a recording of the websinar.

The good news keeps coming! Zilbrysq (zilucoplan) has been listed on the Pharmaceutical Benefits Scheme (PBS) for generalised Myasthenia Gravis (gMG) patients who are AChR antibody positive.*

Zilbrysq (zilucoplan) is a complement inhibitor, and this means that two complement inhibitors are now more widely and more equitably available for our MG patient community in Australia. This means we have access to innovative therapies.

While it is an exciting time, these are new treatments for all of us – doctors and patients alike. Doctors and nurses are in the process of being provided information about the treatments and the process for prescribing them to eligible MG patients.

We understand that patients are also keen to learn about these new treatment options and the MAA will bring information to you as soon as the doctors are ready.

The MAA is your trusted source of information and support. We work in partnership with clinicians, researchers, and industry to ensure you can access accurate and reliable resources. If you haven’t already, check out our website with content that is specific and unique to Australia: https://myastheniaalliance.org.au

The FcRn inhibitor treatments are still progressing through Pharmaceutical Benefits Advisory Committee (PBAC) processes. There is no further information on this treatment group yet.

All the advocacy and stakeholder engagement that has led to this milestone brings us closer to the MAA vision for all MG patients in Australia to have equitable and timely access to the best available treatment that most benefits them.

The MAA thanks the sponsoring company for their work through the PBAC process to offer this therapy for gMG patients via the PBS and for working with us to better understand the new treatments.

A reminder to please talk to your healthcare professional to discuss your treatment options and plan, including any possible side effects or risks.

To read about the other complement inhibitor announcement last month, please see https://myastheniaalliance.org.au/new-targeted-therapy-myasthenia-gravis-pbs/.

If you have any questions or feedback to share with the MAA, please contact us by emailing info@mgaq.org.au or info@myasthenia.org.au, or calling 1800 802 568.

*The MAA and state associations do NOT provide medical advice regarding medications or treatments for individuals. Decisions about whether new treatments will be suitable for you as a patient must be discussed with your doctor or health professional.

Dear Myasthenia Gravis Community, 

Looking back I realise just how much time has slipped away since I last wrote to you. Thank you for your patience and understanding, and hopefully your excitement as the constant stream of newsfeeds has flowed during this period. The MAA has not been idle and it is hard to know where to start in summarising the previous two years! 

Reflecting back to the hugely successful October 2023 Conference which was hosted in Sydney, this event must be seen as the start of great new developments for our patient group. During the Conference, Dr Vucic presented the published data discussing our “Patient Reported Outcomes” information. This was Australian research telling the Australian story! We also offered some SLIDO polling to capture your experience with MG. The words of “challenging” and ‘difficult” resonated with many of you. Your voice has been captured and your feelings have been shared with great impact. 

Susan White and Natalie Windle presenting at the UCB Australia dinner 

In just two years, the MAA prepared eight submissions to the Pharmaceutical Benefits Advisory Committee (PBAC). With each submission to government, the patient stories described the unmet needs and the great desire to have new and innovative treatments made available. The burden of treatment and the inequitable access were also key foci. These lengthy and developing communications were impactful. Patient responses captured during this period were shared and your individual submissions supported our statements. I thank board member Natalie Windle, for the hours of careful consideration and effort that resulted in these detailed submissions being written. 

The outcome from these submissions was very positive with four new treatments being recommended for inclusion on the PBS. However, this is only the first step in a lengthy process of government and company reviews. After fifteen months we are delighted that two of the four products have now been made available on the PBS. Both products are complement inhibitors with Ultomiris (Ravulizumab) becoming available from March 1st 2026 and Zilbrysq (Zilucoplan) from April 1st. 2026. The MAA were present when Minister Butler made a special announcement and personally referenced the Myasthenia community’s long wait for new treatments. With this news shared, the MAA is now focused on making available more information about these treatments and about the requirements surrounding access and eligibility for patients. The information shared will be loaded to the website for repeat referencing. Please take advantage of all the Australian information being captured and shared. This will assist you in having meaningful discussions with your Specialist. Of note – the Australian government has been very broad in offering these products. This is world leading compared to many countries and we are very thankful that our guidance was heard. Access to these products will be reviewed in two years and the MAA will be capturing your experiences to provide feedback for these reviews. 

The Myasthenia Alliance Australia Medical Advisory Board – Natalie Windle, Dr Stefan Blum, Dr Katherine Buzzard, Dr Stephen Reddel, Susan White 

The remaining treatments, two FcRn Inhibitors, are still progressing through the systems. No news is expected any time soon. These treatments are Vyvgart and Rystiggo. 

A huge amount of educational materials have been provided since the last conference. These materials have covered topics including information about the expanding treatment options, understanding the vital role of nurses in MG, an introduction to the assessment tools which will be increasingly used in MG care in Australia and tips to integrating physiotherapy into a care schedule. All this content is available on the MAA website. Use the search button, look in the dedicated sections or track back through the news alerts to find the content you are interested in viewing. www.myastheniaalliance.org.au.  

Keep following the news alerts as so much more information is still to flow in 2026.  

Dr Mike Freelander MP & Susan White at the Rare Voices Day Parliament Event 

Research is another focus of the MAA. We are partnering in self initiated projects, in shared research and in supporting research conducted by others. Surveying MG patients remains an important way of gathering information and data. Every time our community responds to a survey, a positive step forward is taken. The Australian MG community has a reputation for engaging and assisting. This is something to be very proud of. The MAA thanks everyone for rallying each time a request goes out. This positive response ensures that each subsequent research project is positively considered. All this tells our story and fosters more curiosity into understanding myasthenia gravis in greater detail. More surveys can be expected and your on-going support is appreciated. 

The MAA remain very supportive of MGBase. This data source for MG patients is now world leading and membership is growing every day.  

Some fun facts include – 

• As at April 21st, 1866 patient data is captured by 194 members in 16 countries.  

• Most exciting is that 7 sub-studies are listed. The research topics are invaluable. Visit mgbase.org to follow. 

• The majority of registered patients are Australian.  

• Significant fundraising by the Australian myasthenia community ensured that this data base was able to be initiated. 

News about Clinical Trials which are available in Australia is shared via the MAA news alert system. It is exciting to know that myasthenia gravis is attracting much attention and investment around the world and that we can be a part of this. Please keep following by registering with the MAA website. www.myastheniaalliance.org.au 

Susan White and Natalie Windle promoting Myasthenia Alliance Australia to event attendees 

Along side education and research, raising awareness and advocating for MG patients are also high priority areas for the MAA. Your board members are meeting government and industry representatives regularly. They are actively engaged with other patient groups even meeting up late at night in order to speak with European and USA counterparts. Our endeavours are recognised abroad as well as at home. Each engagement deepens our understanding of the patient advocacy sector and offers ideas for improving services to our own community. 

Our third Art With Heart awareness campaign is currently running and will conclude during June International Myasthenia Gravis Awareness Month!  We are extremely grateful to renown artists, local businesses and patients for contributing to this auction. The objective of this project is to facilitate conversation throughout Australia about myasthenia gravis. It is a chance for individuals to talk about this condition without focusing on personal experiences. Every time someone new hears the name it is a step towards more understanding. Again, the success of this campaign lies with everyone doing a little something! Please contribute with donations and then please bid on the auctioned items to show appreciation. The option to make a donation is also available removing any pressure on your contacts to make a bid. Importantly, please tell others and ask them to do the same. 

The items for auction are now available for your viewing. Please visit https://myastheniaalliance.org.au/art-with-heart-auction/ 

Finally, I wish to share that the MAA celebrated 10 years in October 2024. That means that we are now headed to 12 years of amazing work advocating for all Australians. Everyone involved with the work of the State Associations or the MAA is also a patient and works in a volunteer capacity! I thank the MAA board members for all that they give and honour all that is achieved. We would very much welcome additional volunteers. If you want to make life with MG just a little bit more meaningful for you and other patients, please consider getting in touch with your State Association. Family members and carers are welcome. 

Blessings and good wishes to all.  

Susan White – MAA Chairperson 

Most people have never heard of myasthenia gravis.

And for those living with it, that lack of awareness can make everyday life harder than it needs to be.

It can mean delays in diagnosis.
Limited access to the right care.
And a constant need to explain a condition that isn’t always visible to others.

For many, the hardest part isn’t just managing the condition itself. It’s navigating a world that doesn’t yet understand it.

A Simple Way to Start the Conversation

That’s where Art With Heart comes in.

This initiative has been created to do something powerful, yet simple.
Start conversations.

A piece of artwork draws someone in.
A question is asked.
A story is shared.

And in that moment, awareness begins.

It reaches beyond the myasthenia community into everyday conversations with friends, families, healthcare professionals, and local networks.

Why This Matters Right Now

Behind the scenes, the Board and Project Officers at Myasthenia Alliance Australia are continually working to improve outcomes for people living with MG.

That includes advocating for:

• Improved access to treatments
• Better care, including nursing and allied health support
• A stronger, more connected community

But awareness is the foundation that makes all of this possible.

Without it, progress is slower. Voices are quieter. Opportunities are missed.

The Final Two Months

The Art With Heart campaign is now entering its critical final two months.

This is the stage where momentum matters most.

The generosity of talented artists has made this project possible.

The groundwork has been laid.

Now it comes down to how far the message can reach.

How You Can Get Involved

There are two powerful ways you can support Art With Heart, and both make a real difference.

1. Donate an Item or Artwork

If you’re an artist, a creative, a business owner, or simply someone with something meaningful to contribute, this is your opportunity to be part of the impact.

Donating an item helps:

• Spark conversations through creativity
• Increase the reach of the campaign
• Directly support fundraising efforts

Your contribution becomes part of something bigger. A movement that raises both awareness and vital funds.

1. Bid and Show Your Support

When you bid, you’re doing more than purchasing a piece.

You’re helping fund:

• Advocacy for better treatment and care
• Support programs for people living with MG
• Future initiatives and research

And at the same time, you’re taking home something with meaning, a piece that represents awareness, generosity, and change.

Why Your Support Matters

As an organisation, Myasthenia Alliance Australia does not receive ongoing government funding.

Everything we do, from advocacy through to community support and future initiatives, is made possible through donations and limited project-based income.

That’s where Art With Heart plays a critical role.

Funds raised through this initiative directly contribute to:

• Advocacy for improved treatments and care
• Support services for people living with myasthenia gravis
• Research and future programs
• The ability to respond quickly, think differently, and drive meaningful change

In simple terms, every donation and every bid helps strengthen what MAA can do, not just today, but into the future.

It allows the organisation to remain proactive, innovative, and focused on improving outcomes for the entire MG community.

Don’t hesitate one more minute!  

Register here for the Myasthenia Alliance Australia (MAA) Integrating Physiotherapy into Your Care Team with Physiotherapist Rodney Wenceslao. 

Rodney Wenceslao will share practical insights into applying physiotherapy principles to the management of myasthenia gravis, with a focus on adapting movement and exercise to the fluctuating nature of the condition, allowing patients to rebuild trust in their bodies and maintain independence in everyday activities. 

There will also be the opportunity to ask Rodney Wenceslao your questions directly during the Q&A at the end of the session. 

For those unable to attend the live webinar, a recording will be shared via the MAA website after the event. 

Register here for the Myasthenia Alliance Australia (MAA) Integrating Physiotherapy into Your Care Team with Physiotherapist Rodney Wenceslao.

Rodney Wenceslao will share practical insights into applying physiotherapy principles to the management of myasthenia gravis, with a focus on adapting movement and exercise to the fluctuating nature of the condition, allowing patients to rebuild trust in their bodies and maintain independence in everyday activities.

There will also be the opportunity to ask Rodney Wenceslao your questions directly during the Q&A at the end of the session.

For those unable to attend the live webinar, a recording will be shared via the MAA website after the event.

Generalised Myasthenia Gravis (gMG) patients can now have access to a new targeted therapy Ultomiris, via the Pharmaceutical Benefits Scheme (PBS), broadening our treatment options.*

The MAA shared the important moment when Minister Butler announced that this new treatment has been listed, at the annual Rare Disease Day parliamentary event.

Access to new targeted therapies can help increase the opportunities for Myasthenia patients to participate in work, to enjoy more family and community activities, to travel more freely, and to spend more time out of hospital.

The outcome from the Pharmaceutical Benefits Advisory Committee (PBAC) meeting in March 2025 noted that together patients, carers, and clinicians established the unmet needs of our patient community. PBAC “found the comments very informative for understanding the high and unmet clinical need for new effective treatments and the potential use of the new therapies in practice.”

After more than 2 years of advocacy, the MAA is pleased that a new treatment is offered more widely to patients to address our unmet needs. Using evidence from research and patient surveys, we told the patient story, especially for refractory patients who are not responding to current treatment(s) sufficiently and still experience MG symptoms every day.

The MAA also advocated for early and upfront treatment to minimise the poorer outcomes that result from last resort practices, and we highlighted the diversity of our patient experience and our different preferences.

Susan White, Chairperson of MAA said: “It is such an important day for myasthenia gravis patients as they will now have PBS access to a new treatment for this condition. It’s been a long journey to see a new medicine reach the PBS and we thank the government for making an innovative medicine accessible for Australians.”

The advocacy does not stop now. The MAA will continue to work with pharmaceutical companies and clinicians to ensure we monitor and capture adequate and useful data on the use of this therapy.

We will also work to ensure people living in regional/remote areas are not left behind and that other sub-groups of MG patients, including non-AChR+, ocular MG patients and children, can access the best possible treatment for their individual condition.

The MAA aims for MG patients in Australia to have equitable and timely access to the best available treatment that most benefits them.

The MAA thanks the sponsoring company for their work through the PBAC process to offer this therapy for gMG patients via the PBS and for working with us to better understand the new treatments.

Please talk to your healthcare professional to discuss your treatment options and plan, including any possible side effects or risks.

If you have any questions or feedback to share with the MAA, please contact us by emailing info@myasthenia.org.au or info@mgaq.org.au  or calling 1800 802 568.

*The MAA and state associations do NOT provide medical advice regarding medications or treatments for individuals. Decisions about whether new treatments will be suitable for you as a patient must be discussed with your doctor or health professional.

Did you know 300 million people worldwide are living with a rare disease?

Rare Disease Day is a global movement raising awareness and advocating for fair access to diagnosis, treatment, healthcare, and social support for people living with rare diseases.

For more information visit the official website: www.rarediseaseday.org