This person was fortunate enough to have all the blessings he could’ve wished for and came through. By 2022, after some treatments, a surgery and a lot of medication, he is almost living a normal life and regained a lot of confidence in the everyday activities he could only dream of participating in. Throughout this whole time this person has had a lot of support from a lot of people and organisations along the way, including Australian Myasthenia Association in NSW.He has decided to re-train himself for the City2Surf and in the progress fundraise for this organisation and also raise awareness to this rare disease.
Anyone who read this far would’ve worked out I’m this person. It only takes a minute and any money you can give (no matter how large or small) will go a long way.
“The Myasthenia Alliance Australia (MAA) are very proud to continue the good work occurring with International June MG Awareness Month and delight in announcing the launch of an Australia wide “Art With Heart” Auction campaign in support of our condition. This Auction will run through until October and will have a focus on Art Therapy with the lead item for the Auction being a painting by our very own, Lyn Church. Lyn is an award winning Artist from the Gold Coast and she also suffers with Myasthenia Gravis. News from Lyn will follow over the coming months.
The first step in this Awareness endeavour requires us, our strong and committed Myasthenia community, to reach out to our families, friends, neighbours, workmates, health professionals, government representatives at all levels and everybody to ask for contributions to the auction. By doing this we are creating conversation! Conversation is information! Information is awareness! Contributions of all types (large, small, service based or tangible object) will be greatly welcomed. Please see the flyer and auction kit for specific details. Please call to discuss if you are uncertain 1800 802 568.
This is a major undertaking from the MAA and a first attempt to create widespread conversation. It is fully supported by the State Associations and now hopefully, by the MG community across Australia. Please do get behind this MAA campaign. Together we chip away for a better life for all.
Thanking you in anticipation.
An Artist Kit can be downloaded here
Kind regards
Susan White, MAA Chairperson
Do you have a myasthenic syndrome?
(Myasthenia Gravis, Lambert Eaton Syndrome or Congenital Myasthenic Syndrome)?
The impact of the Coronavirus disease (COVID-19) pandemic on myasthenia gravis patients in an Australian population: a nation-wide observational study
Your experience of the pandemic is critical to help your doctors and the public understand the impact of the pandemic on your wellbeing.
To complete a short survey (takes under 15 minutes) begin here:
https://redcap.alfredhealth.org.au/redcap/surveys/?s=WXWKWDM4CMPAJH4N
Your participation is voluntary and all information will be de-identified. This is an opportunity to give us your voice, and we sincerely appreciate your valuable contribution towards representing your experiences. Clinicians treating patients with myasthenia are also kindly invited to participate through the same link.
Principal investigators: Dr. Katherine Buzzard & Dr. Pakeeran Siriratnam
Any questions? Please email: p.siriratnam@alfred.org.au
Participant information statement
The aim of this project is to explore the various impacts of the COVID-19 pandemic on Australian patients with Myasthenia Gravis, with a focus on myasthenia management (timing and choice of immunosuppression, timing of vaccinations and access to care), quality of life and mental health.
We hypothesise that the COVID-19 pandemic has had a negative impact on myasthenia management and quality of life of our patients. The survey is exclusively available through Myasthenia Alliance Australia (MAA) and invites all patients with myasthenia gravis in Australia to participate. The survey should take no more than 15 minutes of your valuable time. The survey is anonymous. The information will be collected via REDCap and stored in a password-protected Excel document.
The results of this survey will provide clinicians and the public with an increased understanding of how the COVID-19 pandemic has impacted patients with Myasthenia Gravis. The findings are not only important as we continue to live with the pandemic in its various stages but may also provide useful information for planning and managing future pandemics. Please only complete the survey once.
There is also a survey for Clinicians. ASK YOUR CLINICIAN TO PARTICIPATE.
FOR CLINICIANS The clinician’s survey should take under 10 minutes. Your unique position as treating clinicians of MG patients during the pandemic will provide great insights into the challenges both you and your patients have faced. The focus is on the impact of your management of myasthenia (timing and choice of immunosuppression, timing of vaccinations and access to care), and the mental health impact on your patients. You will only be asked to do the survey once.
If there are any questions, please address to Dr. Pakeeran Siriratnam via email p.siriratnam@alfred.org.au
Contact details for complaints: Complaints Officer, Office of Ethics & Research Governance, Alfred Health, email research@alfred.org.au, phone 03 90763619.
Throughout the year, we will celebrate this milestone and reflect on the tireless work and generous donations of the Committee and Association members over the years.
We are particularly grateful for the dedicated work of our Founder Elton Rogers who started this wonderful association along with early Committee members, contributors, and donors. The first meeting was held on 24 March, 1982.
Over the 40 years since then: we have provided important patient support and resources with a growing online and social media presence; met every three months to provide face to face support; and published over 160 newsletters. The wider myasthenic community has benefitted from our many donations towards equipment in various hospitals, and national MG projects.
Members will receive more information about an event to celebrate our 40th anniversay in June 2022.
We’re also asking members to send in your stories and memories or share any photos that tell us a bit about the 40 years of MG NSW. Please contact us as soon as possible if you would like to contribute your stories or photos for our 40th year celebrations. We’re keen to hear from you, whether you’re a long-time or new member, so get in touch by emailing info@myasthenia.org.
For more details on membership, please see our membership page.
MG NSW recently collaborated with independent medical education provider Healthed to produce a podcast interview as part of their Clinical Takeaway series.
This podcast helps to raise awareness and educate healthcare professionals about our rare disease. The interview covers issues such as the increasing diagnoses of MG, symptoms, how to test for MG, and referral and treatment goals.
The MG NSW Committee thanks Dr Fiona Chan for her time and for sharing her valuable knowledge, and the team at Healthed for making this podcast happen, particularly Dr David Lim who interviewed Dr Chan.
Listen to: INTERVIEW WITH DR. FIONA CHAN
Dr. Fiona Chan is a neurologist with a strong interest in Neuroimmunology and has been awarded multiple accolades for her clinical presentations in this field. Her work in Rituximab in Myasthenia Gravis was recognised by her receipt of the Early Career Researcher Award. As an invited speaker at the National Myasthenia Alliance Conference, Fiona is a keen advocate for the myasthenic patient population. Her beliefs in empowering her patients has led her to work closely with the Myasthenia Gravis Association of Queensland to update the official website with bespoke information on the diagnosis and treatment of myasthenic patients. She is currently undertaking a Neuroimmunology Fellowship with the Neuroimmunology department at Concord Hospital (NSW) which specialises in the safe treatment of neurological conditions requiring immunotherapy.
Healthed – Healthed has over 20 years of experience delivering professional development for healthcare professionals. It delivers Australia’s most popular seminars for GPs, including the Annual Women’s & Children’s Health Update. With headquarters in Sydney, Australia, Healthed is a trusted source of education for general practitioners across the country. Its digital channels showcase leading expertise and up-to-date information on a broad range of topics relevant to medical professionals. It prides itself on its high quality podcasts, webcasts, monographs, and video content. (https://www.healthed.com.au/)
Our patient reported outcome survey closes on 28 January 2022 so this is your last chance to make sure you complete it: https://redcap-bdsi.anu.edu.au/surveys/?s=PWPFW73R73
A huge thank you to everyone who has done your bit for the research by completing the survey already. We’ve had a fantastic response so far and need just a few more to reach our target number.
Our patient voice really does matter and this survey will help inform policy and health care, as well as provide information for patients like us when assessing choices and assist our physicians in treating us and understanding quality of life impacts.
This research project is about you, the patient, sharing your experiences with the condition and with any side effects or issues from the available range of Myasthenia Gravis treatments in Australia. The project, led by Professor Steve Vucic in collaboration with ANU Biological Data Science Institute, MAA and Terumo Blood and Cell Technologies, is collecting data on the impacts of Myasthenia Gravis on patients’ daily lives, including your work, family and social aspects, and your lifestyle.
If you started the survey, please remember to log back in to complete it and be sure to work your way to the end. If you need any assistance, you can email nidhi.menon@anu.edu.au or call 1800 802 568.
A reminder of some key tips to help complete the survey:
Thank you again to everyone for supporting this project and contributing to this valuable research for our patient community in Australia.
Exciting news!
The Federal advisory body ATAGI (Australian Technical Advisory Group on Immunisation) has recommended a booster/supplemental Covid-19 vaccination for those who are heavily immune suppressed. The Health Minister has indicated that this will be available from 11 October. This gives the MG community a chance to strengthen our response to the vaccine and increase our safety. It is available in the period 2-6 months post the second vaccine. The MAA strongly recommend that everyone on immune-suppressing medications/treatments discuss this opportunity with their treating Doctors. Pfizer and Moderna are the vaccines suggested for this purpose but the AstraZeneca vaccine can also be considered. ATAGI also state that “Serology assaying is not currently recommended before or after the 3rd doses as variations in assays and a lack of accepted correlation of protection make interpretation difficult”.
More details can be found here: https://www.health.gov.au/resources/publications/atagi-recommendations-on-the-use-of-a-third-primary-dose-of-covid-19-vaccine-in-individuals-who-are-severely-immunocompromised.
Dr Stephen Reddel will be producing an updated “Covid-19 Vaccination Discussion Paper – immune-mediated neuromuscular diseases” and this will be distributed as soon as it comes to hand.
Please note that supporting documentation will be required to obtain a Covid-19 3rd vaccination and currently this does not seem to be readily available so perhaps make enquiries when booking.
The minimum participation target for this project is 350 respondents. This will give impressive and guiding information from our cohort. Please don’t think that others can make this happen. We need support from everyone with an MG experience. For over 18 months, the MAA volunteer board, have been dedicated and committed to bringing this important opportunity to our members. Please reward these workers with your time and knowledge.
In response to the many and varied conversations from the MG Community regarding the safety and considerations to be made in evaluating the suitability of the MG community for COVID vaccination, we are sharing a Discussion Paper. The MAA are indebted and extremely thankful to Associate Professor Stephen Reddel (neurologist), and also to those as listed by Dr Reddel, for bringing to us a highly informed discussion paper, inclusive of data, aimed to provide informed guidance on these many questions.
Dr Stephen Reddel has shared an updated version of the COVID Vaccine Discussion Paper to reflect the issues raised about blood clots. Please note the advice for Myasthenia Gravis patients largely remains the same.
To download the paper:
COVID-19-Vaccination-Discussion-NI-v9-11052021
We invite you and your families to read the information gathered. Please do share the information with fellow MG friends and with your Doctors.
In response to the many and varied conversations from the MG Community regarding the safety and considerations to be made in evaluating the suitability of the MG community for COVID vaccination, we are sharing a Discussion Paper. The MAA are indebted and extremely thankful to Associate Professor Stephen Reddel (neurologist), and also to those as listed by Dr Reddel, for bringing to us a highly informed discussion paper, inclusive of data, aimed to provide informed guidance on these many questions.
COVID-19 Vaccination Discussion Update 1
We invite you and your families to read the information gathered. Please do share the information with fellow MG friends and with your Doctors.
Association Management committee members regularly suggest that people keep a diary of their symptoms, medications, lifestyle impacts etc. in preparation for their visits to the Doctor.