2019 MYASTHENIA ALLIANCE AUSTRALIA
MYASTHENIA GRAVIS CONFERENCE
Preliminary Conference Program
• Dr. Stefan Blum
Overview of Myasthenia Gravis and Therapies.
• Assoc. Prof. Stephen Reddel
Rationale and Progress on the eNID Project.
Risks of Immunosuppression.
• Prof. Pam McCombe
IVIg for Myasthenia - new IVIg Guidelines.
• Dr James Morton (Haematologist)
Advanced Therapy Treatment including Plasma Exchange.
MEMBERSHIP SUBSCRIPTION RENEWAL
It’s that time of the year again, when Membership Subscriptions for the financial year 2019/2020 are due.
The envelope in which your newsletter is enclosed will advise you when your membership expires. If you look along the top line you should see “YOUR NAME” followed by some figures in smaller print than your address.
If you receive the newsletter by email and are unsure whether or not you are currently financial, please phone our 1800 802 568 freecall number or email email@example.com to enquire.
Preparations for the 2019 National Myasthenia Conference continue as registrations come in steadily. It is very exciting to see people coming from Victoria, New Zealand, NSW, ACT and of course, Queensland. It is hoped that there will also be attendees from South Australia, Western Australia and Tasmania. Facilitating the 'meeting of others' from each region will be a focus for the organisers. Making contact with people who share similar experiences will also be important. This may include people with LEMS or MuSK or Ocular or Congenital Myasthenia disease.
The MGAQ is very fortunate in that we receive many donations, large and small. These donations, in addition to the generous baseline support of the Queensland Health Department, enable us to continue our wide-ranging work for the Myasthenia community.
The support of our Corporate Sponsor, Ausenco, and an anonymous private sponsor who both very generously make major contributions each and every year is very gratefully received. This solid support gives us confidence in tackling new initiatives.
ELECTION OF OFFICE BEARERS - SUNDAY, 15 SEPTEMBER, 2019
CALL FOR NOMINATIONS FOR THE MANAGEMENT COMMITTEE 2019 / 2020
11 places are available for Committee nomination due to the MGAQ having an increasing range of projects in this new and exciting era of the Association. Your interest in being involved is urgently requested.
People can nominate themselves or anyone else they feel would be a suitable member of this very progressive and dynamic Committee.
Recently there was a shortage of Mestinon and the MGAQ was pleased to be able to send alerts to members regarding this situation. SMS alerts are one of the many benefits of being a financial member of the MGAQ.
Via social media, we received many enquiries as to why some people received the alert and others didn’t. Firstly you need to be financial, and secondly we need to have a mobile number for you otherwise we cannot send you an alert.
Thanks to sponsorship from Rare Voices and MGAQ Inc., Susan White was able to accept a personal invitation from Nicole Millis, CEO of Rare Voices, to attend this luncheon. It was a fantastic opportunity to meet the full Rare Voices team, to see Nicole passionately advocating for people with a rare condition, to flag Myasthenia Gravis with interested Politicians and to experience the issues faced by others also managing a rare condition.
Registrations for the 3 August Brisbane-based event, have been coming in steadily, with conversation about and interest in the next Conference growing. Thank you to all those that have registered and paid!
Many people actively responded to MGAQ and MG NSW requests to apply promptly. As the MAA runs on an extremely low budget and our plans for this event are big, this really helps us manage commitments.
The 2019 Myasthenia Gravis Conference is now confirmed for Saturday, 3 August and registrations are now being taken! The program will cover a range of special interest sessions along with the latest information about treatments for the many variations of Myasthenia Gravis. The cost is $90.00 per person for a full day (8.30am - 5pm) and includes morning tea, lunch and afternoon tea. Susan will happy to answer questions if you call 1800 802 568. Email firstname.lastname@example.org or call 1800 802 568 to request a registration form.
Reach out to your local Federal Member In support of a request for the drug Rituximab to be made available via the PBS for people with Myasthenia Gravis.
The MAA, supported by Dr Blum and others, has written in detail to Minister Hunt drawing to his attention the potential benefits of making Rituximab available via the PBS to people with Myasthenia Gravis and requesting that it be considered. Minister Hunt has written an initial response to this letter so he is aware of the communication.
Please make a donation so that we can continue to provide support for Myasthenia Gravis in Queensland.Make a Donation