MYASTHENIA GRAVIS ASSOCIATION OF QUEENSLAND INC.

PRESIDENT’S ANNUAL REPORT – YEAR ENDING 30 JUNE 2022

This is my sixth annual report as President and I must say that I am very proud of what this association has achieved in the past 12 months. Many current and past management committee members, people with myasthenia, carers, families and friends, past and present, have contributed to this association in many ways and I wish to acknowledge all the support received over such a long period of time.

The fact that Queensland Health funding will continue for the next year with the possibility of an extension beyond that is very encouraging and is recognition of the work we do.  I do wish to acknowledge the continued support by Queensland Health. The management committee ensures that the money provided is well spent and that it meets clear short-term and long-term priorities.

Highlights of the past year include:

• Updating and Printing of our Information Book "Living with Myasthenia Gravis". As some of the information contained was outdated, the management committee worked on updating this resource, particularly in relation to the medical information. A neurologist checked the information contained and, after several edits, the new handbook was completed this year. Feedback from members, particularly those newly diagnosed, has been very positive and the information is highly relevant. This booklet is also provided to medical professionals by members and the committee. A number of neurologists across Queensland have also become honorary members of the association so they receive copies of all information given to members.
• The Success of the Drug Alert Card. This card contains relevant contacts to the cardholder as well as an updated list of drugs to be used with caution. The requests for this new card continue to be very positive and, as well as requests from new members, quite a number of current members have requested this updated card.
   
• A Focus on Membership and our Membership Strategies. The association continues to receive questions and enquiries from people from all over Australia both via the website and our 1800 freecall number. The MGAQ has an introductory package that we send to newly diagnosed people with myasthenia. Within this package is a membership application form for those eligible to join in the hope that they take up that offer. Our website also provides a great deal of relevant information but, in the "Financial Members Only" section, additional relevant information is available only to financial members. This is one way of supporting people who continue to pay the small yearly membership fee.

• Light up Queensland Project. One committee member took on this project as part of the International Myasthenia Gravis Awareness Month and bridges/buildings in Brisbane, Toowoomba, Townsville, Ipswich, Cairns, Longreach and other places were lit up in teal (the MG colour) on a range of dates during June. This year we also had people in other states taking up this project and having structures in their area lit up. Continued support for further development of this very successful project has already started for 2023 in the hope that the number of cities and towns to support this light-up will grow and thus the message about Myasthenia Gravis will follow.
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• Raising Awareness of Myasthenia Gravis. The MGAQ initiated, with the Myasthenia Alliance Australia, a project to help raise awareness within the community about Myasthenia by having people donate artwork pieces to an online auction. We identified a group called "ProfitAbility Virtual Assistance" who were prepared to work with us to organise this project within our budget. All of the pieces in the auction have been lovingly donated by Myasthenia Gravis Warriors and their supporters. All money raised will be used by Myasthenia Alliance Australia to continue the vital work of bringing awareness, providing advocacy, and supporting research for the Myasthenia community. The Art with Heart Auction will be live until 8 October 2022.

• Documenting the MGAQ Committee Members' Accountabilities and Responsibilities. It was recognised that the continued growth in workload of the committee and increased opportunities the MGAQ can provide to its members dictated a need to document the accountabilities and responsibilities of management committee members as well as the processes undertaken for key activities within the MGAQ. The management committee has finalised the Accountabilities and Responsibilities of all management committee members, has added our updated Rules of the Myasthenia Gravis Association of Queensland Inc, and continues to make progress with documenting the regular key procedures which are carried out by a range of committee members.

• Further Upgrades to our Website. The committee is extremely thankful for the IT knowledge and for the hours of work provided by committee members and volunteers to keep updating our very friendly website. Also, our closed MGAQ Facebook that can be accessed from our website has proven to be very successful and new Facebook pages specifically for people from different age groups, for parents as well as those with various types of Myasthenia have been added. Discussion and comments from Facebook are monitored by our website manager for both positive and negative (of which we have very few) comments and any suggestions or issues to be addressed are brought to the next management committee meeting. Follow-up to these comments always occurs.

• The Full Use of the Zoho Program to Keep and Manage Member Information Securely.  The program also enables the extraction of information for particular purposes such as sending the newsletter by mail or email as well as being able to extract the information required to quickly and efficiently send SMS alerts to members. Qualitative data shows that the capacity of this program has continued to improve our working practices. This program has been particularly useful during times of Covid as information about what is expected as well as keeping people informed about the availability of medications has been beneficial.

• Further Production and Development of our Podcasts. The MGAQ has continued to produce more podcasts (now over 20 and continuing to grow) on a range of topics, presentations and interviews. These can be accessed via our website. The number of ' hits' on these podcasts is monitored and anecdotal evidence shows that all podcasts are regularly being viewed by a wide range of members. Our "Dr Podcast" also produces a verbal podcast of our monthly newsletter for those members who have difficulty with reading.
   
• The Use of Technology to Keep the MGAQ Active and Supportive. In 2021/22 management committee meetings continue to predominantly be held using Zoom. Last year and this year we have also used Zoom plus face-to-face for our June meeting and guest speaker. Feedback, particularly from people living away from Brisbane, was very positive as members were able to be a part of important meetings on the MGAQ calendar. DVD copies of the guest speakers are still sent to all financial members and added to our website library. Use of Zoom will continue to grow as people feel more confident with its use.
   
• The Development of the MGBase. Working with the Myasthenia Alliance Australia (MAA) and others associated with MSBase, the MGBase is now operational in terms of being used by a range of neurologists with further development to occur over time.

• Continued Streamlining Supporting and Enhancing the Role of the Regional Co-ordinators across Queensland. Through having a management committee member as the state co-ordinator and a written role description for regional co-ordinators there is a clear understanding of the role and worthwhile two-way communication occurring. Also, we have a co-ordinator for the Coffee and Chats in the Brisbane and the south­east corner and this strategy has gained momentum.

• The Increased Use of the 1800 Number by Members and Others. Our Information Officer is kept very busy with queries, and of just being someone at the end of the phone with whom to talk about concerns, issues or information. Information packs are available to people newly diagnosed with Myasthenia Gravis.

• The National Strategic Action Plan for Rare Diseases. Led by Rare Voices Australia (RVA) with ongoing positive support from the MGAQ, this document was launched with the Federal Government and will be the platform into the future for action around rare diseases. The MGAQ is a key partner with RVA in this endeavor and is heavily committed to supporting it.

• The Development and Use of the Annual Operational Plan and Reporting to Queensland Health. As a means of both ensuring the association is providing for its members and being progressive in its actions and outcomes, three members of the management committee met with Queensland Health officials this week. We find this is a wonderful opportunity to show first-hand the association’s new resources and discuss what priorities the MGAQ is currently undertaking.

As well as the above the MGAQ has been very active within the Myasthenia Alliance Australia (MAA):

• Working with the Myasthenia Alliance Australia and others associated with the eNID project to now have MGBase fully developed.  This is very exciting indeed and hopefully more extensive use of the MGBase will occur in the coming months.

• Continued Work with the MAA on the Federal Government's Policy Recommendations Around "Use of Therapeutic Plasma Exchange in Neurological Conditions in Australia". One of the members of the management committee has been invited to Canberra on numerous occasions to discuss this and other issues around the availability of drugs and equitable access for all. Continued meetings and discussions around how to possibly resolve this issue with the current government will involve a member of the MGAQ management committee.

• Repurposing and Approval for PBS Support without Using the Traditional Methods which are not Achievable for People with Rare Diseases. The MGAQ, through the MAA, has liaised with many key stakeholders on a regular basis, including the TGA, PBAC, Roche and the Health Minister's office. The upcoming successful inclusion of Rituximab on the PBS for people with Myasthenia Gravis is strong evidence of the ongoing success and continued necessity of this work.

• The National Strategic Action Plan for Rare Diseases, led by Rare Voices, which was officially launched in 2000 has three pillars which align strategically with the MGAQ – Awareness and Education, Care and Support and Research and Data. Seeking out and developing research and other opportunities is always a priority.

Our current membership is 329 comprising 250 Category A (myasthenia), 32 Category D (carers) and 19 Category E (supporters) plus 28 honorary members.  While the number of new members usually increases each month, the number of informal and affiliate members continues to grow. Total of 186. Please inform the association if you no longer want to be a member or if a member is deceased.  As mentioned previously in this report, the management committee is working on strategies to support all people who contact the association.  

The MGAQ ends the year in a strong financial position as indicated in the Audited Statement of Accounts.  This is due to the continued funding from Queensland Health, the generous donations received from individuals and sponsors and the exacting financial management by our Treasurer and management committee.

Focii for the coming year include:

• Using technology to ensure efficient and effective management practices.  This includes membership, financial, communication and member resources. For those members who do not have access to technology, resources can be accessed by other means.
• The continued use of the Slack Program to ensure effective and timely communication among management committee members. Reports for our monthly meeting are uploaded for sharing prior to the meeting.  This means key points only need to be highlighted at the meeting and allows time for questions to be asked.
• The addition of podcasts has been a huge, vital step towards remaining current.  A wider range of podcast topics have been developed.  However, we are always looking for more people who want to be involved. Venturing into vodcasts will be the next step to be undertaken. 
• Full use of Tresorit, the cloud-based storage program will be fully implemented so all necessary information can be stored in one secure place.  Identified members of the management committee will have their own ‘Tresor space’ so that information can be easily accessed.
• Continued development of our closed Facebook network. Our management committee Facebook coordinator is always looking for opportunities to connect people who have similar needs.

• Support for current and future research.  The MG Patient Survey is still being distributed and data is being entered. Further analysis will hopefully lead to more research papers being published. A range of other projects, based around specific topics, are being undertaken through the Universities.
• The MGAQ’s commitment through the MAA to MGBase has ensured that the database has been developed further. Data entry by the developing Australian neurologists is progressing well. It is hoped that neurologists across Australia will soon be able to access and use it.

•  Continuing to work with students from higher education courses around projects that could lead to more people being diagnosed sooner with enhanced treatments and quality of life. This area of involvement has grown exponentially.

• Management committee’s continued work on the key project “Enhancing the MGAQ Working Processes and Structure”.  The manual will provide vital information about the responsibilities and accountabilities for each position on the management committee and the documented procedures to be undertaken by people who hold these positions. The thirty years’ booklet will also be an integral part of this manual.

• Working with Rare Voices Australia to support the implementation of the National Strategic Action Plan for Rare Diseases. One member of our committee has assumed responsibility for being involved with this implementation.

• Using “The National Strategic Plan for Rare Diseases” as a basis for agitating on behalf of members to have some medications covered under the PBS scheme. Access to some medications is inequitable and the cost varies greatly. It can be very expensive for some. Having the data and information required to take to the TGA and subsequently to the PBAC is difficult due to the limited number of people with a rare disease. The work continues through meeting and informing politicians of these issues and thus getting their support.
• Continuing to support people with myasthenia through the work of the management committee’s organiser of the regional coordinators and Coffee and Chat coordinator in Brisbane.

• Continuing to support and take the lead in projects associated with the work of the Myasthenia Alliance Australia. 

• Further development of the ‘Lights Up” project and other projects with support from Profitability as a means of raising community awareness about Myasthenia Gravis.

We all know that any organization is only as good as its members. So, in conclusion, I would like to thank the wonderful volunteers on the management committee as well as the many association members who support us during the year.  The amount of work undertaken by management committee members should not be underestimated. Thanks also to the individuals and groups external to the MGAQ who have assisted and enabled the MGAQ to aim for enhanced member care and to agitate for best practice care for people living with Myasthenia.

Regards

Carol Buchanan