From Your Chairperson - Ist Quarter Activity Update 2024

Dear Myasthenia Gravis Community,
Whilst the Myasthenia Alliance Team endeavoured to have some well-earned downtime during the Christmas break there were some key items requiring attention during January and since then the pace has been hectic with many productive and engaging projects now occurring. Additional information is found below.

Art With Heart –

Most significantly, the second ever ART WITH HEART Awareness Campaign is under way!  The aim of this campaign is to share this opportunity with the general population and to familiarise them with the condition Myasthenia Gravis. It is planned that stories will be shared along the way and that there may have a blog! The MAA wants the general community to understand that whilst ‘fun-run events’ and ‘festivals in the sun’ don’t work for us there is much that we do achieve and still love to participate with in our lives. This auction event is a time for our members to showcase their talents, to share with family and friends and to start conversations in new places. We hope that everyone will do their utmost to make the campaign a success. Donations are now being accepted and will be gathered until the end of May allowing time to tell the world that it is on. Bidding/purchasing happens in June. Purchasing is important as it shows appreciation to the people who are supporting us and facilitates the on-going work of the MAA. With knowledge and awareness there is greater understanding of this rare condition and what it means to live with it. We hope for broader workplace options, better support in the general community and more informed engagement with health care providers. See details at https://myastheniaalliance.org.au/art-with-heart/

PBAC Submission for Ravulizumab –

Comprehensive, and hopefully convincing, submissions were made to the Pharmaceutical Benefits Advisory Committee (PBAC) prior to January 31st 2024, summarising the desire and need to secure PBS funding for the new treatment Ravulizumab.  Thank you to our team for the huge efforts associated with the submissions. Thank you also to our members for completing the survey which was sent out during the Christmas period. The survey information showed that approximately half of 200 respondents do not feel well controlled with their treatments and are not as stable as they would like to be. Three quarters feel that the fluctuations make life difficult and that there is a significant burden associated with this condition. New treatments are definitely required to satisfy un-met needs.
Review commentary will be available in the coming quarter.

Research is happening –

Conference Feedback (October 23) strongly focused on a few key items. In addition to understanding more about the lived experience, more research was requested, and a desire to raise more awareness generally and with the medical profession was flagged. Gaining access to new treatments was also a repeated request. In the few months since the Conference, the MAA is engaging with a range of marketing researchers, academics and medical researchers to work in partnership on a range of projects which will hopefully address some of these questions. Please look out for opportunities to share your MG experiences. This will happen through a range of surveys, personal interviews etc. Some will be offered widely via all forms of electronic communication whilst others will be offered via direct contact with Association members. Reports will be shared as they become available. Thank you to everyone who supports these research requests.
MGBase Project (world leading data collection) is expanding and it is very important in facilitating research so do check in with your Specialist regarding participation.

Achieving Political Support –

The MAA Board is working hard to ensure that our community is heard. Leading by example, three representatives attended the Rare Diseases Day Parliamentary lunch held in Canberra on February 29. We spoke with many politicians, introduced ourselves to  Minister Butler, found inspiration from the RVA Ambassadors and heard wonderful speeches from senior politicians reflecting on bi-partisan goals to improve life for people with rare conditions. The theme “Progress Beyond Policy” was progressive and significant. Centres of Excellence are to be developed. How these might look and when they might be established is still unknown but the need to promote integrated and coordinated care across a lifespan is recognised. Sincere gratitude is offered to Dr Mike Freelander MP for his continuous and keen interest in the work of the MAA. He gave us a very warm welcome.
We are asking people to let their local politicians (State and Federal) know that they have a rare disease and that there are obstacles to getting the care needed for a rare condition. We suggest sharing the AWH campaign information and referencing the MAA and State Association websites. Getting an appointment can take time but it will happen and all contact is important so please persist.

    

Association Member Benefit –

A new Association Member benefit is now available. The 2023 Conference Speakers have given permission for us to share the conference content to a controlled group of viewers. Therefore content is being offered via the Qld and NSW Association websites to current financial members. The content is extensive. I recommend taking nine minutes to hear Dr Stephen Reddel’s closing address along with all the other amazing presentations. Please contact your State Association should assistance be required.

More Help Welcomed –

The small group who form the MAA Board work diligently to drive the initiatives we all want. I thank the team for their continued commitment to the wide range of projects and connections that have resulted from the last amazing 10 years of volunteer work. The MAA is ALWAYS looking for additional help and provide lots of support and a warm welcome. It is not necessary for Board members to have the condition so maybe raise the idea with family and friends about giving some time and making a difference. State Association membership is required. Call 1800 802 568 for more information.

Thank you for following the work of the MAA and for reminding others to register on the website. www.myastheniaalliance.org.au

Susan White 
MAA Chairperson.