Myasthenia Gravis Association of Queensland Inc

MYASTHENIA GRAVIS ASSOCIATION OF QUEENSLAND INC.

PRESIDENT’S ANNUAL REPORT – YEAR ENDING 30 JUNE 2017

Welcome to the 26th Annual General Meeting of the Myasthenia Gravis Association of Queensland Inc. This is my first annual report at President and I must say that I am very proud to be a part of such an active, vibrant and supportive association.

We should all feel proud that this association has been in continuous operation for such a long time and that many, many volunteers have enabled this to happen. Many current and past management committee members, myasthenics, carers, families and friends past and present have contributed to this association in various ways and I wish to acknowledge all the support received.

The MGAQ now feels secure with the funding from Queensland Health confirmed until the end of 2019. I wish to acknowledge this continued support by Queensland Health and their recognition of the work we undertake for our members. The management committee ensures that the money provided is well spent and that it has clear short-term and long-term priorities.

Highlights of the past year include:

The development and use of the Annual Operational Plan and Strategic Plan 2017-2019 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.
Streamlining our payment systems. The use of technology for the payment and tracking of same has ensured more streamlined processes and easier accountability.
Upgrading our website to be more user friendly and appealing to those who click on it. Non-members are also directed to the website to download appropriate forms and information.
The success of our closed MGAQ Facebook for members that can be accessed from our website. The success of both the website and Facebook were evidenced in the feedback from the Myasthenia Alliance Australia conference where many people indicated they had found out about the conference through the use of technology.
Formalising the role of the Regional Co-ordinators across Queensland and having a management committee member, Donna Formosa, as the state co-ordinator. This initiative has been very successful with the regional co-ordinators providing a range of support activities for the members in their area.
The extension of the venues for the Coffee and Chat get-togethers for members who live in Brisbane and its environs.
The successful guest speaker presentations. Nicole Millis, Executive Officer, Rare Voices Australia (September 2016), Dr Cindy Gallois and pharmacist Judith Burrows (June 2017) all provided much useful and interesting information which was then sent by DVD to all financial members.
Continued donations for which we thank our generous corporate sponsor (Ausenco) and other donors.
The Kath Ross Memorial Scholarship for secondary school students and the Des Zeimer Memorial Scholarship for primary school students. Entries were of a very high standard and gave some insights into being a myasthenic or being close to someone with MG.
Continued applications for membership of the association. All new category A members are sent a Data Survey to complete. Another analysis of the nearly three hundred survey forms returned and entered will commence in the near future.
Ongoing sales of the MGAQ book “Journey with Myasthenia”. Orders for this publication are now being received from overseas which confirms that people with Myasthenia want to know and learn as much as they can about living with this condition.
Increased requests for the information booklet “Myasthenia Gravis – a comprehensive guide to living with and understanding this manageable condition”, pamphlets and other information that can be given to the myasthenics’ medical personnel, family and friends.
Support for the Myasthenia Alliance Australia, particularly in relation to preparation for the national conference planned for Sydney in July.

Our current membership is …. comprising …Category A (myasthenics), … Category D (carers) and … Category E (supporters). While the number of new members usually increases each month, the number of unfiinancial members is a concern. The managemet committee will be taking steps to rectify this situation in the coming months. The newsletter is delivered to … recipients (…via email and …via mail).

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:

Support for current and future research. The survey data will have further analysis undertaken this year which will hopefully lead to more research papers being published. The MGAQ has made a commitment to eNID (the Neuroimmunology Database for Myasthenias) which is still in the early stages of development but will eventually be a worldwide database for myasthenics.

Continued work on succession planning. The management committee has committed to documenting the role, responsibilities, processes and procedures of all executive positions so that, in the future, transition into new management committee positions will be as smooth as possible.
Reviewing our Constitution and By Laws to ensure they are up to date and relevant. Any changes will be brought to the membership after it has been checked by our lawyer.
Working with students from QUT under the direction of Bill Synnot with support from Shirley Johnston and Susan White to develop a marketing plan that should lead to more people being diagnosed sooner and more funds generated for research which could lead to improved treatments and quality of life.

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. Thanks also to the individuals and groups external to the MGAQ who have assisted and enabled the MGAQ to provide the best support possible to people living with MG.

Regards

Carol Buchanan