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 

The MAA is pleased to share with you that a clinical trial is now open for Australian participation. It will potentially offer an additional treatment pathway for myasthenia gravis patients. 

Please explore more details via the link provided. If you may be willing to participate, speak to your treating neurologist about progressing to the next step. The number of trial sites are expected to increase. 

Here is the link to the website:  

MyClad Study | Generalised myasthenia gravis (gMG) 

Thank You to the Myasthenia Gravis Community

The VALUE-MG study has officially reached its recruitment target, with 216 people living with myasthenia gravis participating across five hospital sites in Australia.

This important research is helping build a clearer picture of how myasthenia gravis affects people’s health, daily activities and work over time, and how these experiences link with real-world treatment and healthcare use.

We extend our sincere thanks to every member of the MG community who took part. Your contribution plays a vital role in improving understanding, care and outcomes for people living with MG.

If you are interested in being involved in future myasthenia gravis research, details are included in the infographic below.

The Myasthenia Alliance Australia (MAA) is proud to continue its important work during International June MG Awareness Month 2026. We need your help now to find items for our Art with Heart Auction to raise awareness of MG and build resources to support the important work of the MAA. 

Get Involved and Make an Impact

The first step in our awareness campaign is for our strong and committed Myasthenia community to reach out to family, friends, neighbours, colleagues, health professionals, social groups and anyone else to ask for contributions to the auction. Raising awareness educates the public and healthcare providers, combats underdiagnosis, fosters community support for patients and drives research and funding. Providing awareness and education about myasthenia gravis comes in many forms throughout the year. Your support ensures this capability is maintained.

How You Can Help Make the Event Successful

Please donate items or ask others if they would like to contribute.

All contributions, big or small, are greatly appreciated. It may be your own artwork or service. Some examples of businesses to approach for donations or gift cards include local art stores, local galleries, jewellers, homeware, glassware, bookstore, luggage store, movie tickets, sports stores and stores that could provide gourmet food hampers. Keep in mind that this is a national event so the item for auction must be applicable to all states and be easily shipped.

Reach out for more information or questions via email to  operations@mgaq.org.au

Look out for our new research project launching in the new year!

The Myasthenia Gravis Association of Queensland is proud to share that we are working with Queensland University of Technology to explore Heat Sensitivity in People with Myasthenia Gravis. With input from leading specialists, including Dr Stefan Blum, we are developing a survey to gather your insights about how heat affects you.

This will be the first project of its kind undertaken in Australia, and it has the potential to shape future awareness, advocacy, and support for everyone living with MG.

A full announcement is coming soon, with the research survey expected to open in the new year.

For now, we simply invite you to stay tuned and look out for more details landing in your inbox.

This is a significant opportunity for our community and a chance to add your voice to this ground-breaking initiative.

We look forward to sharing more with you shortly.

Nurses play a central role in supporting people living with myasthenia gravis, providing not only clinical care but also guidance, advocacy, and reassurance at every stage of the journey. 

In this recent Nursing Excellence webinar, Nurse Practitioner Jenny Stofmeel shared valuable insights into how nurses can support individuals with MG through personalised care, ongoing monitoring, and strong patient partnerships. The session highlighted the importance of understanding each person’s experience and ensuring care extends beyond treatment to include emotional and practical support. 

Above are some of the key takeaways from the discussion, along with access to the full webinar for those who would like to watch or revisit the session. 

Rare Disease Connect in Neurology (RDCN) is an annual meeting that includes both healthcare professionals and patients. I was very honoured to be invited and sponsored by UCB to attend the 5th RDCN in Barcelona on behalf of the MAA and the MG patient community in Australia.

Over 3 busy days, I engaged and spoke with MG patient organisations as well as healthcare professionals from all over the world. Fellow patients and I discussed common challenges and shared insights and ideas for how we can best support the MG community in our countries – we all agree to not reinvent the wheel when we don’t need to!

Sessions for the patient organisations included updates and opportunities with MG guidelines, tackling referral challenges, the increasing role of nurses in MG care, advancing patient-centric clinical research, and the Rethinking MG project. As it was our first time attending, I gave a presentation on the MAA – who we are, what we do, and what we have achieved.

We also joined some presentations with the healthcare professionals for topics including the digital doctor and artificial intelligence (AI), late and very late onset MG, social determinants of health in MG care, and multidisciplinary teams in action.

While it was a whirlwind trip and the jet lag and physical tiredness were challenging, I was so glad to be there. The MAA will make the most of this experience, sharing the knowledge gained and fostering the connections and collaboration with fellow patient organisations.

A big thank you to UCB for this opportunity to learn and to continue building our global network.

Natalie Windle (MAA Secretary and MGNSW President)

The Myasthenia Alliance Australia is partnering with OPTIMAL NHMRC Centre for Research Excellence in improving immunoglobulin use.

There is just 1 week to go until our informative webinar on Myasthenia Gravis! 

Date: Monday 24^th November 2025

Times:

• Eastern daylight-saving states (NSW, VIC, TAS, ACT): 3:00 – 4:30 PM

• Queensland: 2:00 – 3:30 PM

• South Australia: 2:30 – 4:00 PM

• Northern Territory: 1:30 – 3:00 PM
• Western Australia: 12:00 – 1:30 PM

Why attend?

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.

The program covers the current understanding of Myasthenia Gravis, insights from national research on immunoglobulin therapy in Myasthenia Gravis, and how patient preferences can help shape future care. The MAA will also present on the lived experience of MG patients.

Presentations will be followed by a Q&A with all speakers so don’t miss this opportunity to learn and ask your questions to clinicians and researchers! 

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

View the program here.

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 you joining us.

If you have the passion and drive, we’d like you to join the MG Vic Management Board. As a Board member, your voice will help improve the lives of Victorians living with MG.

If you’re interested, please tell us about your experience with MG and how you believe you could assist plus your work background skills.

Right now, we’re looking for people with backgrounds in general administration, secretarial and finance/bookkeeping. People who are a stickler for detail andcan manage our governance and legal requirements.

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

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

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