As we continue to manage, and in some cases, painfully struggle, with our auto-immune conditions, we all do our best
to “put on a brave face”. Are there some things we can do to reduce the on-going stress imposed by managing the
challenges and minutia of daily living and our worrying about the short- and long-term future.
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Welcome
Dear Members,
Welcome to our third 2025 quarterly newsletter. Can’t believe we have so much news to report! Whether you’ve presented, participated, or followed us along the way — this newsletter is one way we stay connected, informed, and supported.
Edition Highlights
Dragons attend Global Remission Conference in Japan
Dr Charmaine Jones and Fay Baudains were proud to take part in an international forum in Japan this year, bringing together voices from seven Asia/Pacific countries. The meeting included clinicians, patient advocates, and community groups — all united around one goal; to improve the lives of people living with autoimmune conditions. Some interesting findings were that despite different health systems, many of the same struggles came up again and again.
Congratulations Arthritis Australia – 75th Anniversary
Our Canberra-based friend Dr Carol McCrum, advanced practice physiotherapist in Rheumatology, kindly represented Dragon Claw at Arthritis Australia’s special 75th celebration held at Parliament House. If you have a moment, we’d love your feedback by completing the survey using the link below. Your voice matters!
Read more: Dragon Claw Newsletter September 2025Our Pain Tool Survey
Living with chronic pain is exhausting. It’s invisible, subjective, and often hard to describe — even to those who want to help. While more research is being done and multi-modality treatments are emerging, the reality is that many of us still struggle to be heard and understood. That’s why, in partnership with Dragon Claw Charity, Pain Education, Chronic Pain Network (Canada) and Pain Australia, we’ve worked for a year with an international group of participants with chronic pain to create a new
communication tool: MPaCT — My Pain Assessment Communication Tool. It’s designed to help you express not just where it hurts, but how it’s impacting your everyday life.
Genomics Working Group Report
Earlier this year we were invited to form a working group to provide patient-centred input to the Australian Government on their plan to implement genomics testing and research across the entire population. Neither of our working group members had any particular expertise in Genomics, so this was an valuable learning opportunity, especially when we were recently asked to provide feedback on an ambitious and detailed draft Genomics Implementation Plan for Australia.
Australian Board Members Networking
Our directors Kathleen Gray and Alison Marshall represented Dragon Claw at the 22 July, Professionals Uplifting Patient Partnerships (PUPP) Networking Event on Developing an Effective Patient Advocacy Strategy. The panel members: Hayley Andersen, Monique Cerreto, Sam Develin, and Rachel Stanton delivered valuable insights on what it takes to build practical, powerful advocacy strategies. They shared their stories on how to define clear plans to unite voices for impact, measure success, including real-world examples.
Dragon Talks Online Weekly Meetings
International Dragon Talks
by Charmaine Jones
Canada: Tue evening
Australia: Wed morning 10 am
May to August 2025
The past three months of our International Dragon Talks have been busy, inspiring, and deeply meaningful. Together we’ve explored important topics that touch so many of our lives:
Living in rhythm: Michael Alexander, naturopath and pharmacist, shared how circadian rhythms affect our health.
Chronic pain and healing the self: Kim Allgood guided us through chronic regional pain and how Internal Family Systems therapy can help.
Fibromyalgia insights: Rheumatologist Dr Emma Guymer updated us on the latest understanding of this condition that is all too common in our community.
Breath Works for chronic pain: Physiotherapist Brian Sanders gave us practical tools to ease daily challenges.
Aging in place, or is it time to move? Alasdair, author of Carer’s Corner, led a rich discussion on choices for later life.
Eyes and stigma in autoimmunity: Colleague Rosemary Ainley spoke about her work on eye involvement and the impact of stigma.
Alongside these sessions, we made space for conversation, community sharing, and even dipped into videos from the Global Lift Project, which many of us have found uplifting.
Australia DragonTalks
by Fay Baudains
Mondays 7 pm
May to August 2025
Our weekly meetings focused on the mental health impact of an autoimmune condition. We learnt about Therapeutic Horticulture, using our senses to listen to your bodies, the stigma of autoimmune eye conditions and breaking the rules of pain. Our community has welcomed many new members and continues to support those living with autoimmune conditions to be educated and empowered about their care.
Monthly Lupus Series, Mondays 7pm: the last quarter has focused on stories from those with lived experience, the experts of lupus. Our summit in Japan expressed the importance of our stories and the power that comes from sharing them. We heard from people who have had a long-term lupus diagnosis, the various treatments they have used both medically and complimentary and how they have lived full lives with their conditions. We also heard from
Prof Alberta Hoi from Monash University on autoimmune conditions, their impact and treatments and the future of lupus research. We’ve seen many new dragons join our community from across the autoimmune and pain spectrum.
Carer Support Corner
Our Volunteer Spotlight
Over the past few months, our fellow Dragons have risen to many occasions, showing the power of community and collaboration. Every one of these contributions makes us stronger. Together, we are raising our voices, shaping policy, and ensuring that people living with autoimmune conditions are represented and heard.
A Heartfelt Thank You
Marilyn Hay led our response to the Genomic Coalition’s request for review of the Australian Government’s genomics proposal. A big thanks as well to our dedicated genomics team: Ali Hope, Charmaine Jones, Kathleen Gray, Fay Baudains and Annette Heininger.
Cami McBride worked wonders preparing Charmaine for her presentation at the Global Remission Coalition meeting in Japan. Cami has also taken on a very active role with preparing our new website!
Julie Armstrong took on the challenge of responding as a patient representative to the Australian General Practice Multidisciplinary Team plan.
Every one of these contributions makes us stronger, and together, we are raising our voices, shaping policy, and ensuring that people living with autoimmune conditions are represented and heard.
Community Corner
Letter to the Editor
What amazing discussions you have, so glad I found you! You provide a place where it is all put together. In Canada health care is in silos. I have found that I had to search for the silos and much more difficult, I had to figure out how to safely fit them together. For example, I am very cautious mixing meds and supplements due to risk of side effects etc. and add into that, diet. In an ideal world one specialist could advise on the package. I have had to read a lot, ask a lot of questions to find my ideal mix. Many people cannot do this for various reasons. Finding prevention support is challenging. Your site is amazing. As a psychologist I am eager to watch this week’s session and can’t wait for next week. Thanks for all you do! Now I am off to see my RA doc. Be well! Marjorie Hogan, Canada.
Out and About
Maple dragons are socializing during their Autumn! While driving across Canada, Dragons Charmaine Jones and Linda Gaudet stayed with Dr Maggie Larché, Rheumatologist and Head of Rheumatology, University of Calgary, Alberta, Canada. They also caught up with co-facilitator of our International Dragon Talks, Alasdair Cook. He stopped by their new home to do a walk-about inspection for them as a certified Master Building Inspector.
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