The 4th National Patient Focused Myasthenia Conference is now completed. 

The MAA wishes to express our thanks to everyone who attended this event for their awesome contribution towards achieving such a very positive day. The volunteers did a great job in making the day flow well and loved being there to engage with so many attendees. I thank these special people for all that they give to others. Many of the team have been working on this event since February. It was very much an MG Family Day inclusive of patients, family and carers, and Health Professionals.

The programme was very full and a great deal of information shared. Some of this information was a surprise, some was motivating, and some was just too technical to remember! Overall, the day focused on the wide-ranging areas of investigation which are occurring in our Myasthenia community.

⦁ Dr Blum explained why research is difficult and acknowledged that we are complex and variable patients needing lots of care and requiring intricate treatment.

⦁ The day revealed that thymectomy is having a positive outcome and that exercising is important and safe if carefully conducted.

⦁ Dr Reddel outlined the range of treatments currently in use and what might be expected in the near future. The detail was complex but it was reassuring to understand that new treatment pathways are being     found. He could not comment on when these medications may receive TGA approval nor if they will be PBS supported.

⦁ There was regular reference to the use of steroids as an important treatment option and the need to follow instructions carefully when tapering. Dr Blum encouraged people to be vigilant should they get an         infection though the initial risk is not higher. He reminded us to get our skin checks and blood tests regularly and to keep up with vaccination recommendations.

⦁ Louise Healy from RVA inspired us all and gave invaluable tips for advocating in any situation whilst Kirstine Shrubsole and Anna Neuwirth reported on how Allied Health services can be very helpful and           that patients need to be proactive to gain best outcomes.

⦁ Importantly, we learned about the rapidly increasing roll out of MGBase and how our data will be useful and important to achieving future goals. Hopefully everyone will soon be registered via their Specialist.

Sponsorship from Alexion, UCB, CSLBehring and Janssen Pharmaceuticals allowed for a high-quality event.

Feedback has been evaluated and suggestions for a future event have been noted.

Kindest regards, 

Susan White – MAA Chairperson