Thank You Dragon Michelle Clewett
Our Board, Patient and Carer Advisory Committee (PAC) and all our members are saying a big "Thank You" to dragon Michelle Clewett for establishing and leading the coordination and facilitation of our second Dragon Talks series over the last two years.
It was started on Mondays 7pm to give our working Australian patients and caregivers, the opportunity of enjoying our supportive weekly teleconferences. Unfortunately, they had been missing our successful first International Dragon Talks series held on Wednesday mornings (Tuesday PM in Canada/US) since 2020.
In addition to securing weekly guest speakers and facilitating these meetings, Michelle also prepared the recorded talks to be edited and uploaded on to our website. She composed summaries of the presentations and future topics for our quarterly newsletter.
As our Canberra-based Ambassador, Michelle has represented our charity at National Health Forums and participated in filmed interviews for sponsors. Being our Lupus Patient representative, she has created and managed our first series of monthly Lupus presentations sponsored by AstraZeneca.
Last year, taking leave from her busy career work, Michelle drove to Melbourne to join the Lupus Day Forum at Monash University with Professor Eric Morand and his research team, meeting Vu Nguyen, leader of Victoria's Lupus Group and their members.
Finally, though struggling with poor health, on the 5th of February Michelle attended our co-hosted Spotlight on Lupus for Parliamentary Friends at Parliament House as a guest speaker on her lived experience as a Lupus patient.
Michelle, we have really appreciated your amazing leadership and dedicated, professional hard work and hope that you continue to enjoy your supportive friendships at Dragon Talks 2 as your successor Fay Baudains takes over the reins.
Regular member of Dragon Talks 2, Jill Berensen, says fondly "On behalf of all our DT 2 members I would like to thank Michelle for her amazing support and friendship. Michelle has created and delivered the most incredible presentations over the last two years. Also, despite her constant ongoing fight with Lupus, she regularly reaches out and extends her compassion and friendship to us in times of need. Michelle's efforts will have a lasting impact on our important charity, encouraging self-care for those with auto-immune diseases."
PARLIAMENTARY FRIENDS SPOTLIGHT ON LUPUS
Group pic of those who continued discussions over morning tea.
Front l-r: Monika Boogs, CEO Pain Aust; Michelle Clewett, Lupus Patient Guest Speaker; Susan Hughes, Director, Dragon Claw Charity; Jenny Ware MP Co-chair of this Parliamentary Friends event; Guest speaker Prof. Eric Morand; Dr. Gisela Mautner, Noxopharm sponsor; Fay Baudains, Dragon Claw Lupus Series 2 facilitator; Dr. Olivier Laczka, Noxopharm; Kelly Tanner, The Pharmacy Guild.
Back l-r: Carol McCrum, Advanced Practice Physiotherapist, Canberra Health Services, Denis Tebbutt, Chair, Dragon Claw Charity, Dr. Sam Whittle, President of the Australian Rheumatology Association (ARA), Tracey Rudd, CEO, ARA, Dr. Jenna Christensen, AstraZeneca sponsor, Gabrielle Bietola, AstraZeneca sponsor, Andrew Thirlwell, Dragon Claw Director, Hazel Gidley Pharmacy Guild.
Once again following the weeks of coordinating speakers and sponsors dragon Susan Hughes pulled off another very successful Parliamentary Friends session, Spotlighting Lupus. This was held on Wednesday 5th February during parliament's first sitting week.
Professor Eric Morand, Dean of the Sub-Faculty of Clinical and Molecular Medicine, Monash University, and Director of Rheumatology at Monash Health gave the group a very clear and emotionally charged summary of where we are with both the treatment and research on what living with Lupus is like for his patients.
Our own Michelle Clewett, who created and facilitated the Monday Dragon Claw Lupus specific sessions presented her story and positioned Eric as a lifesaver and great motivational spirit who is fully engaged and supportive of his patients.
Dr Gordon Reid MP and Dr Sophie Scamps MP spoke of their own experiences as medical practitioners and Jenny Ware MP spoke of her experience being diagnosed with an autoimmune disease. They reinforced why these sessions are so important. The add clarity, as well as bringing such focused knowledge into the Parliamentary scene where members can access the group quickly and efficiently.
The session was sponsored by AstraZeneca and Noxopharm and supported by The Pharmacy Guild, Medicines Australia, Pain Australia, Australian Rheumatology Association (ARA) and Carol McCrum, Advanced Practice Physiotherapist. Parliamentarians visiting the group during a very hectic Parliamentary day included Dr Mike Freelander MP, Chair of the Standing Committee on Health, Aged Care and Sport and Bridget Archer MP.
Dragon Claw was represented by Susan Hughes, Michelle Clewett, Fay Baudains, Andrew Thirlwell and Chair Denis Tebbutt. Following the meeting Andrew and Denis met with The Pharmacy Guild to discuss further collaboration; Susan and Fay met with the Department of Health representatives.
Here is Prof. Morand's presentation: DC Parliamentary Friends Lupus_Prof Morand.mp4
Our Lupus Ambassador Michelle Clewett eloquently talked about her lived experience -- here is her speech: DC Parliamentary Friends Lupus_Michelle Clewett.mp4
Prof. Eric Morand, Dr. Mike Freelander MP, Dr. Sophie Scamps MP, Denis Tebbutt, Dragon Claw, Chair
l-r: Dr. Sam Whittle, President of the ARA and Tracey Rudd, CEO of ARA.
l-r Liz de Somer, CEO of Medicines Aust., Dr. Mike Freelander MP, Member for Macarthur, Dr. Gordon Reid MP, Member for Robertson and Co-chair of this Spotlight on Lupus event.
The Dragon Claw Team: l-r, Denis Tebbutt, Lupus Ambassador Fay Baudains, Michelle Clewett, Andrew Thirlwell, Susan Hughes
Australian Patient Advocacy Alliance (APAA) Annual Summit
On February 12, 2025, I attended the APPA Annual Summit at Parliament House in Canberra. The APAA, representing over 12 million Australians living with complex and chronic diseases, brought together leaders from over 60 national health advocacy organisations to discuss pressing healthcare issues.
Key presenters included Tim Gill from the Obesity Collective, Tarli Sali from the Victorian Office of the Public Advocate, Madeline O'Donoghue from Pathology Technology Australia as well as remarks from the Health Minister, Hon Mark Butler, the Hon Anne Ruston and Dr Mike Freelander.
The Summit highlighted the need for further consultation into the effects of life insurance cover from genomic testing. It emphasised the need for reforms in the Australian healthcare system to enhance patient outcomes, streamline communication between patient bodies and the federal government, and ensure that patient voices are integral to health policy decisions.
As an advocacy body the summit delegates highlighted many gaps in the process of advocacy for their members and called for greater collaboration between advocacy bodies to strengthen impacts and lobbying power.
Women in Life Sciences
l-r: Emma de Somer, Dragon Director Alison Marshall, Liz de Somer, CEO of Medicines Australia, Dragon Director Kathleen Gray.
As directors of Dragon Claw, a charity dedicated to supporting individuals affected by autoimmune inflammatory diseases, we were honored to attend the Women in Life Sciences Luncheon on 7 March 2025 at Dolton House, Darling Island Wharf, Sydney. Co-hosted by AusBiotech and Medicines Australia, this prestigious event brought together over 600 leaders, advocates, and allies to celebrate International Women's Day. The discussions on leadership, diversity, and systemic change in the sector strongly resonated with Dragon Claw's ethos of building an "Autoimmunity Community"—a space where those living with chronic conditions are supported not just in medical settings, but in the 360 days per year they are not at the doctor's office.
The event emphasised the need for holistic, patient-centred approaches in life sciences, a principle that aligns closely with Dragon Claw's mission. The conversations around breaking barriers for women in leadership paralleled the broader goal of empowering individuals to take charge of their health journeys. By fostering strong networks, mentorship, and advocacy, the life sciences sector can drive meaningful change—both in leadership representation and in how we care for people with chronic illnesses. These values were reinforced by engaging discussions with professionals and industry leaders who share our belief that healthcare must extend beyond clinical visits to encompass education, community, and continuous support.
Attending this event reaffirmed the critical role Dragon Claw plays in complementing the medical system, ensuring that people living with autoimmune conditions receive ongoing care, information, and empowerment beyond the doctor's office. The networking opportunities provided invaluable insights into how we can further integrate patient advocacy into the broader healthcare ecosystem. The synergies between Dragon Claw and the life sciences sector are clear—both committed to innovation, inclusion, and improving lives not just in moments of medical crisis, but every day in between.
Overview of Lupus Series -- newcomers welcome!
To learn all about how our amazing Dragon Talks -- Lupus -- play this 2 min. video!
We have been privileged to hear from three more speakers as part of Dragon Claw's monthly lupus speaker series, sponsored by Astra Zeneca. These talks are delivered via zoom. There is no charge. Recordings are posted on our website (www.dragonclaw.net) as they become available.
If you would like to attend these talks, please register via Dragon Claw's website (www.dragonclaw.net).
Book Review
Body Friend by Katherine Brabon
Katherine explores the inner world of a young woman with a chronic illness, much like RA, and living with chronic pain. Using fictional characters, she shows the ambivalence common to us; namely, do I push through and exercise when I feel poorly, or do I coddle myself, curl up with a book, and stay inside? She also highlights the changing and unpredictable nature of our sense of well-being and the impact this can have on our relationships. We can start off feeling great and suddenly "crash"...and vice versa. Plans can be disrupted.
We recently had the distinct pleasure of having Katherine who lives with RA since being in her twenties, join us, along with a short visit by 9 month old Romek. It isn't everyday we get to converse directly with the author!
"Katherine Brabon is an award-winning writer from Melbourne, Australia. Her first novel, The Memory Artist, won The Australian/Vogel's Literary Award in 2016. It was shortlisted in the NSW Premier's Literary Awards and longlisted in the Indie Book Awards. Her second novel, The Shut Ins, won the People's Choice Award at the New South Wales Premier's Literary Awards in 2022. It was shortlisted for the Christina Stead Prize for Fiction, and longlisted for the Voss Prize and the ALS Gold Medal.
Her third novel Body Friend was published in Australia & the UK by Ultimo Press, and in North America & Canada by Bloomsbury. It was shortlisted for the Stella Prize and the ALS Gold Medal." ....from her website www.katherinebrabon.com
Let's watch for her next book: The Cure. If you'd like to find Body Friend: here is the Australian link
https://ultimopress.com.au/products/body-friend
(Also available at most local bookshops)
Here is the Canada/US link:
Your Partners Support Corner
Well, the Seasons, they are a changing......
I thought we should just take a moment to review our Safety and Evacuation Plans and protocols, as recent events have shown that global warming and climate change are not only here to stay, but the events are becoming more impactful on our way of life, oftentimes with shorter warning periods.
If you live on your own, and have a local or family support network, now is the time to review your Safety and Evacuation Plans with them, messages from Fall devices, the operation of external lights, window shades and other visible signs you have agreed with them that will alert them that you need help.
Also, go over your own in-home Plans to stay safe and your preparations to leave quickly. How is your "scoot bag", does it have enough season appropriate clothing, in-date spare medications, toiletries, cosmetics if appropriate, and cellphone/tablet/laptop chargers, copies of your most precious photos, legal documents etc? If you use an electric wheel chair, is it serviced regularly, is it always charged up just as you go to sleep, or if you use a walker or rollator, are they in good condition and accessible?
For Carers with Patient Partners the review should be similar and just as detailed, with the exception that the Carer should also review the home evacuation plan, are the walkways always clear if you have to physically help/carry your Patient/Partner out to the vehicle? Once the person is safely in the vehicle, are the scoot bags with the medications and other important items, wheelchair, walker etc, close enough to put in the vehicle in a rush? Is your vehicle serviced and full of petrol/gas or fully charged and ready to go on a daily basis?
Remember, "Practise makes Perfect", and so whether you are on your own, or have a Carer, you should hold practice evacuations at least at the beginning of the change in seasons, and whenever you have signs that there are dangerous weather events coming your way. It is never too early to seek safety.
I am happy to share my basic "scoot" list, email me at:
Meanwhile, keep to the Plans, stay safe and alert, and most of all, keep smiling and striding into the future.
Out and About
Dragon Susan Hughes was honoured to join Dragon Aunty Lynda Holden a Proud Dunghutti woman at the Symposium on Ageing: Our future: Enabling older people to live their best lives. Held in Sydney by the NSW Ministerial Advisory Council on Ageing 3 March. Aunty Lynda is a member of this Council and has identified how Dragon Talks provides a supportive community for those with chronic conditions, especially seniors.
l-r Dragon Dr. Charmaine Jones and Dr. Linda Li of Arthritis Research, Canada. Dr Li has spoken with Dragon Talk 1 on movement and is a researcher in how important movement is for us!
Christmas with dragons: L to R, Linda Gaudet, Charmaine Jones, Kathleen Kett, Marilyn Hay, and Lois Hall.
Off zoom for a change and catching up in Canberra after the Lupus event. l-r: Dragons Fay Baudains of Western Australia and Dennis Tebbutt of NSW with Monika Boogs, CEO, Pain Australia of Australian Capital Territory
Dragon Talks 1 Australia/North America
Summary January - March 2025
As has become our custom, we dove into the New Year with a self-assessment lead by Charlotte Breckwoldt (nee Hill). We followed this with two sessions in case we were bitten by the New Year's resolution bug and were likely to take on too much too quickly: "Rest" by Susan and the concept of "Pacing" by retired physiotherapist, Jane Louis.
On March 4/5 we were able to attend the Lupus Voices Parliamentary Friends event via Microsoft Teams. What a great presentation by our dragon Michelle Clewett and a very heart-felt educational session by Prof Eric Morand. How lucky were we to be able to attend from our homes. You may wish to have a look at these. The video recordings will be posted on our website under the tab "Live Well", "medical matters", Lupus event.
We were able to debrief the following week and watch the very excellent video our Director Philip Godsmark did promoting Dragon Talks.
It was time now to start sharing the results of the research Dragon Claw undertook with CaPPRe, an Australian research firm specializing in Community and Patient Preferences. Maya Joshi from CaPPRe presented research and results with us. It is clear that Australian patients want/need more information about their conditions.
One thing we have in spades is our stories! We hope to learn from Moya Sayer-Jones how to share our stories with impact! We had a special 90-minute ssion with Moya at the end of February. The story prompt was either "Let me tell you about living with...." or "This is what it's like to be me..."
In March, we continued to explore stories with author Katherine Brabon, who has RA and has written a novel, Body Friend (reviewed in this newsletter). Lucy Mayes from the HUSH foundation joined us again to share the importance of the narrative.
As we move into the change of seasons, we have an interesting line up. Bibliotherapy, the LIFT project, movement, failed medical devices, Chinese medicine, and internal family systems model of psychotherapy will be woven into the upcoming months. If you'd like to be on our weekly invitation list, please contact
Charmaine and Alasdair continue to facilitate our sessions. If there are topics you would like us to cover, please let us know.
Interested? please contact Charmaine,
Dragon Talks 2 Aussies 7pm Mondays
DT2 and the Lupus Series
Thank you to our members and guest speakers for sharing their insights about using storytelling to enhance wellbeing, pacing ourselves in order to preserve limited energy, how thoughts create feelings and impact bodily functions and what we can do to influence these processes to optimise wellbeing.
Through our monthly lupus speaker series, sponsored by Astra Zeneca, we have heard about how and why exercise is crucial for managing lupus, the differences and similarities between lupus and rheumatoid arthritis, the life changing impact that treatment with the new lupus biologic (Anifrolumab Saphnelo) has had for one lupus patient, and the importance of collective advocacy across patient organisations in order to enhance outcomes for people impacted by lupus. These talks are delivered via zoom. There is no charge. If you would like to attend these talks, please register via Dragon Claw's website (www.dragonclaw.net). Recordings are posted on our website (https://www.dragonclaw.net/index.php/live-well/pillars/medical-matters) as they become available.
In mid-April, Michelle Clewett will finish up her term as facilitator of DT2 and the lupus series and pass the baton into the very capable hands of our dear dragon Fay Baudains.
Everyone is welcome. If you are interested in attending, please email: