Awareness Activity Update

Myasthenia Alliance Australia > News > Uncategorized > Awareness Activity Update

Dear MAA Supporters,

I write today as Chairperson of the Myasthenia Alliance Australia (MAA) to share some important news for the Myasthenia Gravis (MG) community here in Australia. The MAA is hosting an awareness activity to raise the profile of MG.

Myasthenia Gravis affects muscle strength. This includes the small muscles that keep eyes open, it includes the big muscles that give strength to all the tasks of daily living and it includes the muscles that allow speech, voice, swallowing and breath. It is a very fatiguing condition which is prone to significant fluctuations making life unpredictable, at risk and diminished. There is no cure and treatment regimes can be very demanding and intrusive.Unlike many other conditions that have fun runs, big walks or elaborate gala events to raise their profile…. we just don’t have the energy.  What we can do is craft! So we are celebrating our talents and bringing awareness through an Art Campaign.

Lyn Church is a renowned Australian artist and is also an MG Warrior. She first raised the concept of an Art Auction as a mode for conversation. This year, in support of Lyn, two other key Australian Artists have donated paintings supporting people with Myasthenia Gravis. The artists are Herman Pekel and Chris Searle. Other warriors have donated according to their skills or some due to their connection to people with MG.

You can explore what is available here – airauctioneer.com/art-with-heart-auction-2024-myasthenia-gravis/resin-wall-artwork-set

Importantly you can help out by sharing this email. By encouraging others to visit the Myasthenia Alliance, the Myasthenia Gravis Association of Qld and the MGNSW websites they may better understand this condition and the work that is undertaken. This will achieve our key objective.

We want people to have heard of Myasthenia and to perhaps learn a little about the great challenges of living with this chronic neurological auto-immune condition. We know there are others with the condition who are not aware of the support offered through the Associations. Having a conversation can lead to great things.

Should you choose to participate in this auction by purchasing or donating (and we hope you will consider this opportunity carefully), the funds raised will empower the MAA to continue engaging in advocacy and awareness work. This year the MAA have already sent delegates to Canberra and Sydney for various functions. These included the RVA-hosted Rare Disease Day Parliamentary Lunch, a round table meeting with Minister Butler focusing on HTA Reform and attending the Neurological Alliance Australia (NAA) National Summit on Neurological Conditions. We receive many invitations to attend highly relevant events but as the MAA is fully volunteer-run and donation funded we must be very conscious of overheads. Monies raised will foster additional engagement with politicians, industry representatives and fellow rare disease advocates. With new treatments coming and a growing appetite to value ‘the lived experience’ it is important that we are represented.

Placing a bid also recognises the contributors and the journey that they undergo themselves or share with others. Please consider showing your support.

If you want more information I am available via the Freecall phone number – 1800 802 568.

Art With Heart Auction – airauctioneer.com/art-with-heart-auction-2024-myasthenia-gravis/resin-wall-artwork-set
MAA – www.myastheniaalliance.org.au
MGAQ – www.mgaq.org.au
MGNSW – www.myasthenia.au

Thank you so much for taking the time to read about the work that is so important to achieving best outcomes for the Myasthenia community.

Sincere regards

Susan White