News Update March 2020

This month the story is ALL about the exciting opportunity to represent the Myasthenia Gravis Community in Canberra, celebrating Rare Diseases Day along with the Rare Voices Australia team. Witnessing the launch, from Health Minister Greg Hunt, of the National Strategic Action Plan for Rare Disease was a privilege.…

Administered by the Myasthenia Gravis Association of Queensland Inc.

The Myasthenia Gravis Australia Parents & Grandparents Facebook page has been established for Parents and Grandparents of children (under 25 years old) diagnosed with Myasthenia Gravis.

It is a place that…

In our February Newsletter, we talked about a new Podcast service for 2020 targeted to further improve members knowledge and understanding of matters related to their Myasthenia Gravis (MG). One of the podcast series is entitled ‘Ask the Expert’.

This Series allows members to…

As people with a chronic illness, particularly inclusive of those who are immune suppressed, the Myasthenia Gravis community should be very familiar with the precautions needed to stay safe from infections. With the COVID-19 virus spreading it is important for patients and their families to be extra vigilant. This includes:
• Keep your distance from other people and avoid all larger gatherings. Stay engaged with your community
via the telephone.
• Washing and carefully…

The booklet “MG Xplained” is a wonderful resource that has been uploaded to the MGAQ website.  This resource was not produced by the MGAQ, but we were very lucky that CSL Behring sponsored the production of this very user-friendly, easily understood explanation of Myasthenia Gravis.  We wish to thank CSL for this wonderful support of such a worthwhile project.  The association also acknowledges the work of Dr Stefan Blum, who advised throughout the writing and production to…

Rare Disease Day takes place on the last day of February each year, this year being 29 February, with the main objective to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives.

Organised by Rare Voices Australia.

The Drugs to be Used With Caution information has been formatted into a wallet card containing members personal details as requested. This item will replace the previous Medi-Alert Card.

The online application can be found at: https://mgaq.org.au/medi-alert-card

Susan White, MAA President, is delighted to be attending the Parliamentary Event to be held in Canberra, on Wednesday, February 26th in celebration of Rare Diseases Day. Dr Mike Freelander MP, Mr Trent Zimmerman MP and Rare Voices Australia will host the day. Health Minister, Greg Hunt, is to launch the National Strategic Action Plan for Rare Diseases. It will be a significant day.

Susan will be available on Tuesday afternoon (…

THE WINNER OF THE KITCHEN BUNDLE OF ENJO PRODUCTS IS... JODY

"Personal highlight was my husband joined me and WOW the day was so insightful for him.  As we live six hours away from my specialist, run a business, have a family, we rarely have the opportunity to travel together to do weekday appointments.  So to educate him 8 years after a diagnosis was such an eye opener.  A weekend together with MG being our…

Consistent with its Rules the MGAQ, through its Management Committee, has always had a focus on growing the benefits available to its member community.

One of its present projects, which shall be released progressively through 2020 and beyond, involves the production of a group of audio and video podcast series. The project targets enhancing the knowledge and awareness of MGAQ members about myasthenia gravis…