News

(Myasthenia Gravis, Lambert Eaton Syndrome or Congenital Myasthenic Syndrome)?
The impact of the Coronavirus disease (COVID-19) pandemic on myasthenia gravis patients in an Australian population: a nation-wide observational study 
Your experience of the pandemic is critical to help your doctors and the public understand the impact of the pandemic on your wellbeing.
To complete a short survey (takes under 15 minutes) begin here:

June is International Myasthenia Gravis Awareness Month.

June Awareness month for Myasthenia Gravis is worldwide and MGAQ has organised through local Councils and private organisations to “Light Up” landmarks in recognition of Myasthenia. Please go and view these landmarks. Take a moment to reflect on your MG journey.
Capture the image and share so Myasthenia can gain more awareness in the community.
This will help with research. This will help you with your MG journey.

Where to begin! The agenda for the recent MAA Board meeting included 29 items of general business! We are certainly spread across many areas of Research, Advocacy and Awareness. It was an exciting meeting as the Board realised the momentum that is now behind our work.

Hey everyone, let me introduce myself. My name is Chloe Wigg and I am a visual artist and person with MG. I have done a number of exhibitions focusing on resilience and I am an advocate for those with invisible disabilities.
I am going to be working on a project over the next few years and am looking for 2000 empty mestinon bottles (bottles, lids, the whole kit and kaboodle).
They can be the timespan bottles, instant release 60mg, 10mg bottles or any other strength bottles.

Our patient-reported outcome survey closes on 28 January 2022 so this is your last chance to make sure you complete it: https://redcap-bdsi.anu.edu.au/surveys/?s=PWPFW73R73 

Dr Stephen Reddel would like to draw attention to the announcement made by ATAGI in regard to a booster Covid Vaccination for people who receive immune-suppressing treatment.

You're invited to the MGAQ Christmas Function
to be held at
Caloundra Power Boat Club
2 Lamerough Parade, Golden Beach
on 
Sunday, 12 December, 11.30 am lunch sitting
 

For more information / RSVP - Contact Susan
Email: info@mgaq.org.au • Freecall 1800 802 568

In  March 2019, more than two and a half years ago, an MGAQ member, who lives in Regional Qld, contacted the Association to share a story. The member's family had made contact with the local Federal Member hoping to receive some support in accessing a particular medication at a reasonable price. The medication was Rituximab (a B cell suppressing medication) and it was not PBS supported for myasthenia patients. Local Federal Member, Keith Pitt, joined with the Association and also Dr Kuyler, to write to Minister Hunt.

Thank you, thank you, thank you to ALL the people who have ensured that we are half way to the minimum target numbers already! This support is very gratifying and much appreciated. Some respondents are not technology users but have asked for help and made it happen. What stars you are!!! 
Meeting the completion target by Christmas - how can this objective become a reality?

An interesting and informative podcast has been produced to discuss the latest myasthenia research project. Prof. Steve Vucic, the project’s lead researcher, explains the value of this work and the unique potential for this patient reported survey. Take the 11mins needed to hear him by requesting the podcast from podcast@mgaq.org.au.