The Australian MG story is now told! 

The MAA are proud to announce that the Patient Reported Outcomes Study, which was strongly supported by the Australian Myasthenia community, is now referenced via an article in the Journal of Clinical Neurosciences – Clinical features, treatments, their impact, and Quality of Life for Myasthenia Gravis patients in Australia, .

 

We congratulate the researchers Janet Sansoni, Nidhi Menon, Lachlan Viali, Susan White and Steve Vucic for their contribution of significant time and much diligence which has resulted in this comprehensive and impactful document.

 

The paper has been made available with free access until December 2023 and following this via the Journal.

 

It can be found here –  https://authors.elsevier.com/sd/article/S0967-5868(23)00285-0

 

The MAA gratefully acknowledge TerumoBCT’s significant contribution to this project and for the opportunity to work in partnership.

 

There are significant and indisputable, evidence based findings highlighted in the document. These findings will support conversations with Government and Specialists, and will help others to understand the challenges of living with this condition. The MAA hope that further research projects result.

 

Susan White

MAA – Chairperson

 

MG Lived Experience Patient Research Request

Industry Engagement Opportunity for AChR+ MG Patients – The MAA appreciates your interest in this market research if you feel you can help

Are you interested in sharing your journey and experience with Myasthenia Gravis (MG) to help others better understand the current lived experience and impact on daily life?

 

Alexion Astra Zeneca Rare Disease is seeking expressions of interest from a number of patients diagnosed with AChR+ MG to participate in an online research activity that explores the patient journey and the impact of the condition on daily life.  This information will be helpful to guide the development of person-centred education materials for healthcare professionals and the MG patient and caregiver community.

 

De-identified insights will also be shared back to participants and the MAA, and help build on the rich body of research that the MAA community is developing to increase awareness of MG.

 

What does it involve?

You will be asked to register and consent to join an individual online portal where you will be given some questions and tasks which can be completed in about 75 minutes over a 2 week period.  All participants will be offered compensation for their time to complete the exercise.

 

If you would like to register your interest, please fill out the registration form at

Final Reminder: Survey closing 24 September| Survey of MG needs

 

Thank you to the more than 150 people who have already completed the survey. For those yet to respond, this is the final reminder and the survey will close on 24 September. This is the LAST opportunity to make the voice of the MG community heard!

MAA are supporting a pharmaceutical company to collect feedback from people with MG (or caregivers) on educational and support needs for MG medications. The survey will ask about your MG diagnosis, preferences for using internet and smart devices for managing MG and medications to treat MG.

The survey is completely anonymous, and your identity will not be shared with the company.

The results of the survey will be used to inform the development of a comprehensive program of resources to support the administration of medications to treat MG, and will aim to ensure the best experience for people with MG.

This is your final opportunity to share the needs of the MG community, so please take the time to complete the 10 minute survey before it closes on Sunday, 24 September 2023.

Click the link below to complete the survey.

https://forms.office.com/e/MF2sSQittA

MG National Conference 21 October 2023 – LAST CHANCE TO REGISTER!

Registrations for the MAA October 21st October 2023 Conference to be held in Sydney are now rising steadily with representation coming from every State and Territory (except NT so far) and also New Zealand.

This boutique event will be a coming together of people who are genuinely invested in Myasthenia. Patients, Carers, Health Professionals, Specialists and Industry Representatives have registered and communicated a sincere interest in learning and sharing. A pathway to better health can be achieved when we work together. Every attendee will have something to contribute towards this day.

A great deal of thought has gone into making attending as manageable for patients as possible. Examples of this include the use of a small, easy access exclusive venue with a limited capacity of 120 attendees. A ‘cuppa’ on arrival will hopefully refresh everyone followed by a substantial morning tea and lunch to get through this stimulating day. There is a drop off bay at hand and parking is close by. Lots of seating both inside and out is available during the breaks and signage will assist people to find others from their home state. A dedicated event manager will be on hand to assist throughout the day. The volunteer team are excited to meet with friends, new and old. Naturally, they will be wanting to make everyone feel welcomed. Wheelchairs and wheelie walkers can be accommodated. (Please note this on the form). Best of all, attendee privacy is a priority – it is a safe space where individual needs will be understood.

Whilst not everyone interested in coming along is in a position to attend, it is envisaged that benefits from the day will flow through to our community for many months to follow. Information will be shared as is practical and new initiatives will be open to all for participation. Everyone will benefit at some level.

The MAA, MGAQ and MGNSW teams are dedicated to making this event a truly special encounter and a very forward thinking day. I thank these volunteers for being so willing to donate tirelessly of their time and energy and for supporting me once again in another bold endeavour to ensure that Myasthenia Voices Do Matter!

An updated version of the programme for the day will be available this month. This programme will honour the support and engagement of our sponsors. Sincere appreciation is expressed to Alexion, CSLBehring, UCB and Janssen.

Kindest regards,

Susan White – MAA Chairperson

 

REGISTRATIONS ARE NOW OPEN FOR THE 2023 MYASTHENIA GRAVIS CONFERENCE

Message from: Myasthenia Alliance Australia

Registrations are now open for the 2023 Myasthenia Gravis Conference, to be held at the Concord Hospital Education Centre, Sydney on Saturday October 21 2023  – 9.00am to 4.30pm

The Registration Pack (which includes the Registration Form) can be downloaded from MAA Conference 2023 – Registration Pack

or just the Registration Form can be downloaded from MAA-Conference-Registration-Form-v1.0

Please complete the registration form and send it, along with your contribution of $185.00 per
person, by 21 August to either treasurer@mgaq.org.au or Denise Hannay, 9/24 Kendalls Road, Avoca
4670.

We are delighted to also offer EARLY BIRD REGISTRATION of $170.00 due by 30 June 2023.

• Any cheques should be made out to The Myasthenia Gravis Association of Qld Inc.
• Bank details for direct deposits are BSB 124032 and account number 10263772 and reference to
include wording ‘conf’ and your full name. Please inform us by email at treasurer@mgaq.org.au if
you have paid your registration by direct deposit so this information can be cross-checked.
• PayPal is available via Freecall number 1800 802 568.
Your successful conference registration, along with any additional information, will be confirmed by
email or, if you do not have email, by mail.

Myasthenia Alliance Australia was formed to support the needs of Myasthenia sufferers from all states, particularly on issues and items of national importance.

    

Support Ricky Chan – City to Surf – 2023

Hi All,
It’s me again. Last year feeling a bit recovered from MG I challenged myself to complete the City2surf. It was a little bit of challenging myself and I was also hoping to be a beacon of light for those who have suffered a great deal of adversity.
After finishing it I think it’s starting to grow on me a little bit and I’m going back for it.
From this week onwards I’m pledging to run for at least 30min every week towards the event and would like to tap into everyone’s actions of generosity in supporting my cause of raising funds for Myasthenia Gravis NSW. Support comes in all shapes and forms, while I aim to raise $500 again on one hand I’d be even happier if more of you would join my cause and raise funds for the cause as a runner. 

This is the link to my fundraising page, Grassrootz.
 Link: : https://city2surf23.grassrootz.com/myasthenia-gravis-nsw/ricky-chan

Thank you in advance

Ricky

Updated COVID Booster Advice 2023

ATAGI have recently released updated COVID booster advice for 2023 which has been accepted by the Government and includes availability of new bivalent vaccines. These contain both the original COVID-19 variant and also an updated vaccine against Omicron variant.

Overview:

  • ATAGI recommends a 2023 COVID-19 vaccine booster dose for adults in the following groups, if their last COVID-19 vaccine dose or confirmed infection (whichever is the most recent) was 6 months ago or longer, and regardless of the number of prior doses received:
      • All adults aged 65 years and over.
      • Adults aged 18-64 years who have medical comorbidities that increase their risk of severe COVID-19, or disability with significant or complex health needs.
  • MG would reasonably be considered a medical comorbidity that increases the risk of severe COVID-19, so this applies to essentially all adults with MG.

ATAGI also recommends: bivalent mRNA booster vaccines are preferred over other vaccines.

The bivalent vaccines include: Pfizer Original/Omicron BA.4/5, as well as Pfizer Original/Omicron BA.1 or Moderna Original/Omicron BA.1. Note: Moderna Original/Omicron BA.4/5 is currently under evaluation by the Therapeutic Goods Administration.

MAA Chairperson’s Annual Report 31 October 2021 – 31st December 2022

The past fourteen months has convincingly demonstrated why it is so important for this small patient group of approximately 2,500 people to have a strong National voice and a united stance. This is the leadership provided by the Myasthenia Alliance Australia.

Addressing medicine shortages, facilitating research opportunities, bringing awareness and community connection as well as making meaningful connections with government, health professionals and Industry have kept the MAA busy through the 2022 year.

By registering at www.myastheniaalliance.org.au and following the activities of the Australian State Associations in NSW and Qld people have been kept abreast of the work which has been undertaken throughout this past year. Given below are the highlights from an extraordinary year’s work by a very small volunteer team.

Rituximab for Myasthenia patients. Rituximab is confirmed available equally to all Myasthenia patients should their Specialist wish to consider this medication choice. Listing via the PBS was finally achieved on September 1st 2022. We thank the relevant Government Departments for bringing about the legislative changes required for this unique situation.

Art With Heart Awareness Campaign. A first-time project was introduced to bring Australia wide conversation about the rare condition of Myasthenia Gravis. The platform of on-line art/craft/other auctioning allowed patients to come together in a fun and collaborative space. It allowed the general public to learn about the condition and to offer tangible support and it established a platform for building awareness. This year’s “Art With Heart” campaign was an inaugural offering and now it needs momentum to be a signature event for the myasthenia community.

Mestinon supply shortages. Many, many hours of work have been devoted to communicating with the pharmaceutical  companies, Government Departments and our community as this difficult and as yet incomplete issue progresses. Thankfully, due to the on-going work of the MAA, all Government Departments including the Minister’s Office are familiar with our condition and have been supportive.

Access to TPE. Following a recommendation from the Health Minister’s Office a submission to the MBS Review Taskforce occurred September 2022. This follows four years of effort to fully understand the issues and interactions surrounding the declining access to Therapeutic Plasma Exchange as a treatment option for people with Myasthenia Gravis. The ‘Patient Voice’ option proved to be the only suitable platform for raising an issue that is so multifaceted. Feedback is expected in 2023.

Partnering with Rare Voices Australia (RVA). Every year the MAA reports on the collaborative work undertaken with this group. The RVA has gone from strength to strength and now celebrates 10 years. Once again, we have worked collectively on many topics. Susan was delighted to attend an amazing summit for the rare disease sector, hosted by RVA in November 2022. As an invited presenter, the MAA were able to provide a case study demonstrating the importance of partnering across the rare disease sector. This opportunity allowed the MAA to cement contacts with many Heads of Government Departments, with Industry and with our peers in the patient advocacy world.

Research – The Patient Reported Outcomes Research Project in collaboration with TerumoBCT, ANU, MAA and the University of Sydney was completed. This project is hugely significant in both size and information collected. The data collection phase was closed off late January 2022 and data analysis progressed slowly but steadily throughout the year. Indicative results have already proved invaluable to the MAA. Some results have been generally shared. A Journal Article and a Conference Paper are expected in 2023. This work is highly credible thanks to the number of participants. A huge thank you is extended to the Australian Myasthenia community for responding so positively to this project and to other requests which occurred during the year. Fostering research remains a focus and opportunities have presented across a broad range of topics in 2022.

Foundational and follow up work continues for the MAA and the diversity of topics is noticeable. This includes on-going support for MGBase, seeking to enhance the website, communicating more deeply and keeping up with a rapidly engaging Patient Voice sector.

The work undertaken in 2022 and indeed during the previous eight years since inception of the MAA, has brought additional recognition and understanding of the experience of living with Myasthenia each and every day. This growth in knowledge is being experienced within our own community as well as with Government, Industry, Researchers and Health professionals.

The MAA is a fully volunteer run and donation funded organisation. The financial status of the Alliance has declined in 2022 due to some major expenses. Currently it remains viable, operating on low overheads. All donations are very gratefully received and can be made as designated contributions via the State Associations.

In summary, the MAA Board are keenly focused on the “What Next” and “How To” conversations for 2023. Regrettably the current operational model involves a reducing worker base and an expanding platform of work. This puts the future viability of the MAA at risk. We must find solutions for the future sustainability of this organisation. Therefore, we aim to seek out fresh ideas from everyone with an interest in supporting people affected by this condition. Funded and unfunded models need to be considered.

Please reflect on the fact that over half the MAA Board has each individually donated almost ten years of time and energy to supporting everyone around Australia. It is time for others to come forward. It is time for other State Associations to be founded. Sadly, during the medication crisis, many of the more distressed callers were Victorians – they simply did not know that the medications were becoming short and did not know who to reach out to.

As Chairperson, I deeply thank my team of four for their tireless, gracious and generous commitment to this significant work. The depth of support runs deeper with the Committees of the NSW and Qld Associations giving generously also. This year has seen an increasing number of people registered with the Alliance. Without this support our work could not be effective. Our sincere appreciation is extended to everyone involved.

2023 will be my final year as Chairperson. Ideally, the year will be spent mentoring others as they become involved. Progressing the organisation to a more enduring operational model is also a priority.With very best wishes for people to stay strong and to find joy in 2023.

Susan White MAA Chairperson.

MAA Update on Mestinon Supply – 25 January 2023

More good news about Mestinon supply improving for both 60mg and 180mg! The Mestinon supply shortage has been an evolving issue over the last few months and the MAA has been actively monitoring the situation and speaking with government and industry stakeholders to ensure we can access this important medication. We thank you for contacting us and your state associations with your feedback and we appreciate this has been concerning and sometimes frustrating. Please see the latest update below.

180mg/Timespan
The shortage of Mestinon Timespan 180mg tablets is now expected to resolve on 31 January 2023. The supplier iNova have confirmed they have received 180mg stock. They have despatched backorders and can now fill new orders for their wholesalers. Approximate dates wholesalers should be able to fulfil pharmacy orders are:

• NSW, VIC, ACT & QLD: 1 February 2023
• SA & NT: 3 February 2023
• WA, TAS & NORTH QLD: 6 February 2023

Please note there may still be a few days for your pharmacist to then receive your order and get it to you.

To meet demand throughout January, Medsurge received a second Section 19A approval for another 180mg product (MESTINON-SR pyridostigmine bromide 180 mg slow-release tablets Canada) and they have confirmed sufficient supply of this product with the TGA. However, please be aware that the PBS listing for this particular product had not yet been approved at the time of writing this update.

We encourage you to speak with your pharmacist and ensure they are aware of iNova’s recent stock arrival and the resumption of usual processes for 180mg supply.

60mg
The shortage issue has been resolved and supply has resumed. Pharmacists can access 60mg from their usual wholesaler.

The TGA have assured us they will continue to monitor the supply of Mestinon and facilitate patient access where possible.

Susan White, MAA Chairperson
Natalie Windle, MAA Secretary
Glenda Bidner, MAA Board Member

Good news for the new year! The latest indication from iNova and via the TGA website is that the Mestinon 60mg supply shortage has been resolved sooner than expected.  

Wholesale orders for Mestinon 60mg have been despatched and wholesalers started receiving stock at their warehouses from 3rd January 2023. It is estimated that pharmacists should then receive and be able to dispense Mestinon 60mg approximately 10 business days after this.  

This means the process for your Mestinon 60mg is essentially back to ‘normal’ and pharmacists should place orders directly with their wholesaler and not with iNova.   

For the 180mg/Timespan, the supply shortage remains current and Medsurge continues to fill orders for 180mg under Section 19A. This product is subsidised by the PBS and you take your normal prescription to your pharmacy and your pharmacist then contacts Medsurge to place the order.  

A reminder that it is worth putting in your scripts earlier than usual for either 60mg and 180mg to ensure you receive your next lot of Mestinon before you run out.  

 
Susan White, MAA Chairperson 
Natalie Windle, MAA Secretary 
Glenda Bidner, MAA Board Member 

The MAA has continued to engage with government and industry stakeholders to ensure there is clarity and continued access to Mestinon 180mg and 60mg at a manageable cost for MG patients in Australia. We understand that this supply shortage has caused distress and concern for some of our community and we encourage you to check in with your Doctors as needed. Below is a comprehensive update on the current situation and we thank you for your patience as we navigate this unique and complex situation.   

Thank you also to everyone who completed our short survey concerning your use of these two medications as this data can help with our ongoing conversations with industry and government.  

 
Timespan (180mg):  

A reminder that the Section 19A 180mg product has been approved and is subsidised by the PBS. This product is coming in to Australia through Medsurge and they are filling orders as they come in.  The shortage of the usual Australian-registered Timespan is expected to be impacted until 24 March 2023 and the Section 19A arrangements have been approved until 31 May 2023 to assist with this shortage.
 
60mg: 

The Section 19A 60mg product has been approved and there will be no interference with any of the PBS listing arrangements for this medication. Please note there are some constraints in place to reduce stockpiling and orders from pharmacies are limited to ‘1 product bottle per order’ to ensure that the majority of patients can get access to the medicine until the shortage is resolved.  The sponsor, iNova, has confirmed that supplies of the Australian-registered Mestinon 60mg tablets are in transit and the shortage of this usual 60mg product is expected to be resolved late December 2022 (sooner than initially expected). iNova is confident that the Section 19A supply can cover the market until the shortage resolves.  
For both of the above, please take your normal prescription to your pharmacy and then your pharmacist contacts the relevant sponsor (Medsurge for 180mg and iNova for 60mg) to order and fill your script. It is important to be vigilant with your own supply of your medication and please get your scripts in earlier than you normally would to ensure your order can be placed and you do not run out. 

Thank you again for your patience and understanding. The MAA represents MG patients at the national level and if you have any further concerns or feedback, please contact us.  

Email info@mgaq.org.au or call 1800 802 568  
Email info@myasthenia.org.au or call (02) 4283 2815 

 
Mestinon Shortage -your help is requested.

As per previous communications, the Myasthenia community are aware of the efforts being made by the MAA to bring about a re-established supply of Pyridostigmine/Mestinon medication for Australians. To further conversations with Industry and Government the MAA are looking for data about the amount of medications we require on a weekly basis. Your assistance in completing this short survey would be greatly appreciated. No personal data will be held. Thank you for your support. Please use the following link. https://www.surveymonkey.com/r/LVC889T

Susan White MAA Chairperson
Natalie Windle, MAA Secretary/MGNSW President
Glenda Bidner, MAA Board Member/MGNSW Vice President

MAA update on Mestinon supply – 2 December 2022 

The MAA continues to stay abreast of the Mestinon supply shortage issue and is in regular contact with government and industry stakeholders. The latest update for Timespan (180mg) and 60mg is below. 

Timespan (180mg): Section 19A approval is extended to 31 May 2023 (previously approved until 30 November 2022) and this is listed for subsidy under the PBS. This means you should pay what you normally pay for your Mestinon Timespan script. Medsurge Healthcare is currently assisting with the import and supply of this product. Please get your scripts in so that your Timespan can be ordered. 
  

60mg: Section 19A approval has now been confirmed to 31 May 2023, however the PBS subsidy is not yet confirmed but we understand an application is pending. iNova Pharmaceuticals is currently assisting with the import and supply of this product.   
 

A reminder that Section 19A aims to reduce the impact of the shortages of the usual Mestinon products brought into Australia.  

 

Please ensure you take information provided by the MAA updates with you to your pharmacist to assist with the process.  

 

Thank you for continuing to support each other as a patient community and if you have any concerns or feedback please contact us: 

Email info@myasthenia.org.au or call (02) 4283 2815 

Email info@mgaq.org.au or call 1800 802 568 

Update on Mestinon Timespan – 19 November 2022

Given the current supply shortage for Mestinon Timespan (180mg), the Myasthenia Alliance Australia has previously notified our MG community that it is available under an alternative arrangement (Section 19A) through Medsurge Healthcare and you use your regular prescription for this. 

We strongly encourage you to get your script for Mestinon Timespan to the pharmacy now and please do not let your own supply of Mestinon Timespan be less than 1 month.  

Please let us know any feedback by contacting us:  

Email info@myasthenia.org.au or call (02) 4283 2815 
Email info@mgaq.org.au or call 1800 802 568 

We recognise that there are ongoing supply issues for some forms of Mestinon (particularly Timespan 180mg and 60mg) in Australia. We appreciate this can be concerning for MG patients who take Mestinon continuously and/or regularly.

The MAA supports the needs of MG patients from all states and we are working for our community to ensure there are alternative solutions for accessing Mestinon during the supply shortage. We assure you that we are actively keeping abreast of this situation. Please see recent updates below and your state associations (MGNSW and MGAQ) and the MAA will keep you as up-to-date as we can.

Mestinon Timespan 180mg is available under Section 19A, with Medsurge Healthcare using suppliers in the USA. Patients only need their regular prescription to obtain Mestinon Timespan from their pharmacy. A price can be more clearly determined once the stock arrives.

For Mestinon 60mg, if ringing around is unsuccessful, patients need to visit their doctor and ask them to complete a Special Access Scheme (SAS) form and submit this to the Therapeutic Goods Administration (TGA). Once this is approved, it will be returned to the doctor to then pass on to the patient. The patient will submit this to their pharmacist, who will use this approval number to order the medication (each script will be processed and ordered separately). The pharmacy will be advised of the cost of the medication and will inform the patient.

Please visit the TGA website regularly as this will help confirm the need for Mestinon for MG patients.

More information on Section 19A approvals to address medicine shortages is available here and more information on the SAS is here.

Natalie Windle, MAA Secretary/MGNSW President

Glenda Bidner, MAA Board Member/MGNSW Vice President

Please check your prescriptions and ensure that you’re not running too low on any of your required medications. As Mestinon is a unique product and unable to be substituted, please be vigilant if you require this medication.

Ricky Chan’s City2Surf Fundraiser

Myasthenia Gravis patient Ricky Chan is taking on the challenge of the 2022 City2Surf! This is no mean feat and MGNSW is grateful to Ricky for raising awareness of MG and raising funds for MGNSW through his City2Surf endeavours. Thank you Ricky and we wish you all the best!
To support Ricky and donate, please go to his fundraising page: https://city2surf22.grassrootz.com/myasthenia-gravis-nsw/ricky-chan-to-fundraise-for-city2surf
Ricky describes his MG journey and why he is raising awareness and funds in his own words:
“In 2017, someone caught a nasty condition. It started off with dripping eyelids, then losing strength in everyday activities bit by bit. In just 2-months time this person was on a hospital bed and wasn’t able to even move or turn his body. He was only able to take in liquid food. Doctors says if it was to get worse the ability to breathe would be going next. This…is…. myasthenia gravis.

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.

I thank everyone in advance for supporting this cause.”

Australia wide “Art With Heart” Auction

“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

Impact of COVID-19 on Myasthenic Patients – Survey

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.

2022 marks the 40th anniversary of the Australian Myasthenic Association in NSW (MG NSW)

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.au or by calling (02) 4283 2815.

For more details on membership, please see our membership page.

HEALTHED PODCAST: Interview with Dr Fiona Chan – MG is on the rise.

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/)

 

 

 

 

Patient reported outcome survey closing soon

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:

  • Allow around 45 minutes in total. A ‘save and return’ option is available if you need to take a brief pause.
  • Make a list of ALL treatments/medications prescribed and consider any short or long term side effects experienced as a result of these.
  • Have your diary/calendar at hand to reflect on your past twelve months. You will be asked to report on your current MG experience and also any additional services utilised in this period.

Thank you again to everyone for supporting this project and contributing to this valuable research for our patient community in Australia.