Dragon Claw Newsletter September 2025

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.

Highlights of this edition are:

• Our delegation to Global Remission Coalition Asia-Pacific meeting at Fukuoka, Japan. Our delegates Dr. Charmaine Jones of BC, Canada and Fay Baudains of Perth, Australia proudly attended the Global Remission conference in Japan. Charmaine was invited to be guest speaker presenting our resource to empower patients, My Numbers. They have both shared PowerPoint summaries of the meeting with our members at respective Dragon Talks. Although the countries have different health care systems, the challenges to patients living with autoimmunity cross the boundaries. See their detailed summary in this newsletter.
• Invitation to join us at our Retreat in February 2026.
• Launch of the trial for My Pain Assessment Communication Tool (MPaCT)
• Our Genomics Team's brief to the Australian Government
• Celebrating Arthritis Australia's 75th Anniversary at Parliament House
• More stories by our amazing volunteers including Letter to the editor, our usual Dragon Talks updates, action-packed Out and About and Caregiver's Corner.

Yours in self-care,

Editorial team: Dragons Susan Hughes, Dr. Charmaine Jones, Anne Hughes and Alasdair Cook.

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.

DRAGONS ATTEND GLOBAL REMISSION CONFERENCE AT JAPAN

L-r: Dragons Dr. Charmaine Jones and Fay Baudains

Fukuoka, Japan

Sharing Learnings from Global Remission Coalition's meeting in Japan, 2025

Charmaine and Fay 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: improving the lives of people living with autoimmune conditions.

Common Challenges Across Countries

Despite different health systems, many of the same struggles came up again and again:

• Access: Long waits to see specialists — sometimes months or even years — followed by very short consultation times.
• Workforce shortages: Too few doctors and nurses trained in immune-mediated conditions. Countries are tackling this in different ways: expanding medical training or empowering patient education groups. Australia is putting forward an ambitious 4-year program for IBD involving primary care/specialists and multi-disciplinary teams.
• Time to remission: The longer it takes to access care, the longer it takes to reach remission — and this has lifelong impacts.
• Financial Barriers: Every country struggles with questions of what medications are covered, for how long, and under what requirements. These differences have a direct impact on patients' wellbeing and equity of care.

Dragon Claw shared our approach of patient education and empowerment, including our new My Numbers tool. Join us for a Dragon Talk Oct 14/15 for a presentation of our new tool.

Advocacy: The Next Frontier

Most clinicians are not trained to influence policy. Most patients don't know where to begin.

• We need advocacy training, time, and support to build relationships with decision-makers.

Looking Ahead to 2026

The forum ended with two powerful questions for us all:

What will we work on during 2026? How will we measure our success?

Dragon Claw is committed to being part of these conversations and to continuing our mission: connecting people, sharing knowledge, and empowering our community to live well with autoimmune and immune-mediated conditions.

L-r: Neil Betteridge (Chair, Global Remission Coalition), Dragon Dr. Charmaine Jones, Brian Kennedy (Executive Director, Global Alliance for Patient Access)

L-r: Off zoom, delighted to meet in person in Japan, Prof. Eric Morand, Leader of Monash Lupus Clinic, Melbourne Australia with Dragon Director, Dr. Charmaine Jones from Canada.

CONGRATULATIONS ARTHRITIS AUSTRALIA – 75th ANNIVERSARY

l-r: Dragon Claw's representative Dr. Carol McCrum with Prof Ranjeny Thomas & Dr Mona Marabani

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.

She writes as follows:

Thank you so much for opportunity to attend this event on behalf of Dragon Claw.

The Prime Minister popped in briefly to offer support as his mother had RA and he was a significant carer for her. Dr. McCrum wrote the following for our newsletter, sharing her feedback of this event.

Prof Thomas discussed their potentially ground breaking research that has received significant funding: Major funding to move Rheumatoid Arthritis immunotherapy drug towards clinical trials

I am pictured with Prof Ranjeny Thomas & Dr Mona Marabani

Dr Mona Marabani is a consultant rheumatologist who works in private practice in Sydney. Trained in rheumatology at the Centre for Rheumatic Diseases in Glasgow and at Royal Prince Alfred Hospital in Sydney, Mona is currently a visiting senior specialist in medicine and rheumatology at Canterbury Hospital. She is a former President of both the Australian Rheumatology Association and Arthritis Australia, and continues to support Arthritis Australia as a Director Emeritus.

I also caught up with Dr Jeanette Pritchard, Medical Researcher and consumer (RA) with Mr Adnan Asger Ali (Director of Accelerate Physiotherapy Practice, Canberra and Chair of the National Musculoskeletal Physiotherapy Association (Australian Physiotherapy Association)

Extremely successful event and excellent advocacy support from the MPs.

Dr Carol McCrum
BAppSci(Physio), PGD(Manip), Dip.Inj, NMPresc,Dip.Msk Med (RCP Edin.),DPT
APAM, MMPA, FCSP, FMACP
Advanced Practice Physiotherapist in Rheumatology
ACT Health Allied Health Professional of the Year 2022
BSR Nurse and Allied Health Research Excellence Award 2023
Division of Allied Health & Division of Cancer & Ambulatory Services | Canberra Health Services

INVITATION TO OUR RETREAT

We are excited to announce the upcoming Dragon Retreat on February 6 to 8 (thanks to Dragon Annette Guterres for the invitation inspiration).

If you are keen to join us at Mary Mackillop Retreat Centre, please complete the Booking form. Further details are included below. When you click on the booking form it says it will redirect you to a microsoft booking form - don't be alarmed this has been set up by the Dragon Claw team to collect info for the booking.

Meet late Friday morning. Room check-in from 2pm on Friday.
Bring your own lunch. Dinner out locally (we'll find somewhere that works for everyone).

Saturday breakfast, morning tea, lunch, afternoon tea and dinner at accommodation. The Centre has advised that they can manage any dietary requirements - please provide details of dietary requirements at the time of booking - Let us know what you can eat and like to eat (rather than a list of cannot eats), so that we can give a couple of options to the chef.

Sunday breakfast included with accommodation.

There is disabled access. Children are welcome. If you have any questions, please send an email to This email address is being protected from spambots. You need JavaScript enabled to view it. or contact the Centre direct on (02) 4368 2805 or This email address is being protected from spambots. You need JavaScript enabled to view it..

Cost of 2 nights' accommodation including food on Saturday and Sunday breakfast (this includes the second night 10% discount).

Single room cost per person
$440 to $520 (depending on room availability)

Twin share room cost per person (2 persons sharing)
$380

Once we receive your completed booking form a 20% deposit paid needs to be paid within 10 days. Deposits are refundable if cancelled before 7 November 2025. We will send bank details for payment of the deposit following receipt of your booking form.

We hope you can join us.

Dragon Alison Marshall

Our PAIN TOOL SURVEY

By Dragon Dr. Charmaine Jones

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 persons 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.

MPaCT

And if you have a moment, we'd love your feedback by completing the survey using the links below.

MPaCT Survey – Consumer
https://form.jotform.com/252190993192867

MPaCT Survey – Clinician
https://form.jotform.com/251861958614063

Because your pain is real, and your voice matters!!

We Are Strong Because of Our Volunteers

Over the past few months, our fellow Dragons have risen to many occasions, showing the power of community and collaboration. A heartfelt thank-you to everyone who stepped forward:

Marilyn Hay led our response to the Genomic Coalition's request for review of the Australian Government's genomics proposal. 🙏 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 rep to the Australian General Practice Multidisciplinary Team plan.

🌟 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.

Photo by Sufyan

GENOMICS WORKING GROUP REPORT

By Dragon Marilyn Hay

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.

Our working group members are: Ali Hope, Annette Heininger, Charmaine Jones, Fay Baudains, Gregory Holden, Kathleen Gray, Marilyn Hay. None of us have any particular expertise in Genomics so this has been a valuable learning opportunity, especially when we were recently asked to provide feedback on an ambitious and detailed draft Genomics Implementation Plan for Australia. But we are all well aware that genomics testing could result in much more effective diagnoses and treatment strategies than the hit and miss approach that so many suffer today, particularly in terms of finding the most beneficial and effective medications to put autoimmune conditions into remission.

In our response to their draft plan, we applauded their stated values and expressed concerns.

Stated Values:

• Implementing this regime with a patient and community centred approach;
• Their commitment to respect the sovereignty of Aboriginal and Torres Strait Islander people in determining if and how they will implement genomics testing, as well as in having full control of all their data and;
• Their sensitivity to the need to ensure absolute data management integrity while crafting a system to be used at all levels of government and with service provider partners, as well as academic researchers.

However, we expressed concern that their draft plan was not created through consultation with patient or community groups, or with Aboriginal and Torres Strait Islander people. Nor was there any detailed budget or assured funding sources to address the scale and speed of what they hope to implement nation-wide within five years.

We underscored the need to ensure total data integrity and privacy, and the need to ensure treatment remains person-centred, not disease-centred. We challenged the enormously expensive intent to test 'everyone' including children with possible hereditary vulnerabilities but who aren't exhibiting any symptoms rather than focusing on those who have autoimmune diagnoses, at least to begin with, to expedite the delivery of effective treatments.

We also suggested that given the potential billions of dollars that a project like this would cost to create and maintain, Australia might better consider major investments in disease prevention and good health promotion strategies.

Finally, Kathleen Gray provided a detailed clause by clause review of the draft plan to help them focus on areas needing further thought and/or clarification.

We were very pleased to be invited to provide this input – and to have now been invited to participate in follow up discussions around a number of these considerations.

BOOK REVIEW

The Thursday Murder Club by Richard Osman

At a recent Dragon Talks meeting about planning for retirement and aged care, this book was discussed and the following reviews are by two of our dragons.

By Dragon Jan Frazer

Just another wonderful aspect of our Dragon Fest 2 in 2023 was meeting in person the interesting, intelligent and gifted band of Dragons whom I felt I knew so well from our regular screen meetings. One such member is Annette Guterres. This brilliant, gentle soul was sitting there reading a book on murder.

Being a bit on the nosey side I had to enquire what on earth would entice her into a subject so gruesome as murder. Annette assured me that yes, it was murder, but it wasn't scary, dark murder. It was, in fact, rather an amusing and pleasant version of, well, several murders.

The Thursday Murder Club is written beautifully and is a story about four quite disparate people who live in an aged care facility in England. Don't be put off by the term aged care. The people who inhabit this facility all live independently in this rather large, sprawling set of buildings called Coopers Chase Retirement Village and whose cognitive abilities are well and truly intact. All that we meet anyway. And characters are added to the main four very quickly and conveniently along the way.

Without giving too much away the Thursday Murder Club meets each Thursday and it would seem it is something of a closed shop. It is not a recreational pursuit offered to all comers. Elizabeth, who heads the group, and is responsible for producing each unsolved murder to be dissected and solved by the group, is very particular about who is to be included.

The book begins with narration by Joyce who manages to be included in this select group because she is a retired nurse and, quite apart from that, everyone likes her. We discover that Elizabeth is late of MI5. Ibrahim is a retired psychiatrist and Ron is, well, Ron. He barracks for West Ham and wears the tee-shirt to prove it and is introduced to us in shorts and flip-flops and is told to "shut up" on several occasions by Elizabeth.

They are all rather savage on a glass of wine I can tell you! The Thursday Murder Club meets each Thursday to dissect and solve unsolved murders. Then it happens. A real life murder at Coopers Chase and then the fun really begins.

That's book 1. There are four and a fifth of them being released later this year.

In the meantime, if you have access to Netflix, Book 1 has been turned into a film and is really good. Fabulous cast headed by Helen Mirren as Elizabeth, Joyce is played by Celia Imrie, Ibrahim is the brilliant Ben Kingsley and Ron is played so well by Pierce Brosnan.

I can recommend The Thursday Murder Club for very enjoyable reading and viewing.

By Dragon Annette Guterres:

It is always a risk recommending a book particularly when you don't know what type of books folks are interested in, but I had no hesitation in recommending the Thursday Murder Club books to Jan on our retreat last year. They were given to me by one of my daughters and in the next few weeks they were passed around the family. Everyone enjoyed them! So, the question is "Why are the Thursday Murder club books so enjoyable for people of all ages? Well, for one thing the characters are so well developed you really feel so you are getting to know them, to know their little intricacies and know what pushes their buttons. Elizabeth is the one who has the analytical mind, but she needs her colleagues with their skills and connections. What a random bunch they are who help her solve the murders that they decide fit their criteria.

Who would expect that 4 aged folks in a retirement home were not spending their time playing Bingo but getting themselves into all types of danger as they encounter a wide range of shady folk. It is that unusual scenario that grabs your attention when you start reading the books. The stereotype of an older person is broken and well and truly shattered. The supporting characters in the book are also very well developed.

The movie was well made, but it lacked the depth of the books; I hope people don't skip reading them just because they've seen the film. Read the books!

Now I have a mystery of my own to solve. Of the four books my daughter gave to me three have been returned. Where is the 4th?

Your Partners Support Corner

By Alasdair Cook

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?

This is one of the stresses we hear a lot about, how are we going to manage if...., what sort of situation/mess are we going to leave if something happens unexpectedly, must you continue to tidy up the cushions and clean off the kitchen sink every time you leave the home, just in case? I am sure none of us wants to be regarded, or remembered, as an untidy, slovenly and non-caring person.

Remember that song, "Don't worry, be Happy!" by Bobby McFerrin, (1988)? It is a great mantra to follow, however difficult it may seem at times. In the short term, start by not worrying about what other people might think if the cushions are out of place and the carpet/floor needs vacuuming, or the kitchen sink is full of dishes. Everyone we know should understand that we, our family members and our carers are doing their very best to manage the day-to-day given our personal limitations.

The mantra still works in the long term. Whether you have a "best before date" or not, you have no doubt done your best to put things in order, made a Will, made an enduring Power of Attorney, talked to family and friends about your hopes and wishes for the future, and so, hard as it might be, trust them to manage these things should the time come. If you can do this, you can stop stressing and get the most out of the positives in each day, each week, and so on.

We all deserve to spend our time, especially our "Golden Years", being happy, and not worrying and stressing over that box of family photos in the loft that we want to sort out, the fate of that collection of parents or grandparents antiques, the crystal wine glasses, and collections of buttons or duck decoys, the little bowls of pebbles from every beach you ever visited! These things will, believe it or not, be taken care of thoughtfully and with care.

Whatever happens, people will regard us with respect, for our bravery and stoicism, our humour, our compassion and empathy, and our involvement in legacy programs where we continually volunteered our time for the future benefit of others with auto-immune issues. We actually all deserve to not worry, and to be happy, every day, as the mantra says.

In closing, try to get the most out of each day, live life to the fullest, stay safe, and most of all, keep smiling and "pushing the envelope" into the future.

Interested in sharing future Caregiver topics? Email me at: This email address is being protected from spambots. You need JavaScript enabled to view it. Dragon Alasdair Cook.

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.

l-r: Dragons Swinder Pigott, Charmaine Jones and Linda Gaudet, Calgary AB	l-r: Dragons Linda Gaudet, Swinder Pigott Charmaine Jones, Calgary AB
l-r: Dragons Charmaine Jones & Alasdair Cook, Cammore BC	Dragons Alasdair Cook & Linda Gaudet, Yarrow BC
L-r: Dragons Lynda Gaudet, Charmaine Jones with Dr Maggie Larché	L-r: Dragons Linda Gaudet, Marilyn Hay and Charmaine Jones facilitating the International Dragon Talks together, Waterloo, ON

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.

International Dragon Talks Australia/North America

Tuesday Evenings Canada and Wednesday 10am Australia

By Dragon Dr. Charmaine Jones

Summary May - 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.

✨ And we're not done yet! Coming up this season:

• Dr. Tasha Stanton busting myths about osteoarthritis.
• Dr. Diane Lacaille on "Making it Work" — navigating challenges in the workplace.
• Our monthly chronic pain session with new practical strategies.
• A panel on aging to keep the conversation going.
• And we'll be wrapping up the inspiring Lift Project together.

We'd love for you to join us.
Would you like to be added to our mailing list?
📩 Just drop a line to Charmaine: This email address is being protected from spambots. You need JavaScript enabled to view it.

Dragon Talks Australia 7pm Mondays

By Dragon Fay Baudains

Dragon Talks: 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. If you are not currently joining us at Dragon Talks Australia, we would love to see you soon.

Everyone is welcome. If you are interested in attending, please email our Facilitator Fay Baudains: This email address is being protected from spambots. You need JavaScript enabled to view it.

Help Lines

MHA B.A.M Helpline
Call MHA's free national B.A.M helpline (Back pain, Arthritis and Musculoskeletal Conditions) to speak with qualified health care professionals about your musculoskeletal health.

Being diagnosed with a musculoskeletal condition can be overwhelming. Whether you are seeking information, support and direction or simply want to know what you can do for your musculoskeletal health, MHA's B.A.M helpline is a free national service you can call on 1800 263 265.

Arthritis Infoline
Call the toll-free national Arthritis Infoline on 1800 011 041 for information about arthritis and other musculoskeletal conditions including self-management, community programs, seminars, support groups, and other resources. The Arthritis Infoline is staffed by health professionals and specially trained volunteers in your state or territory who can answer most questions about living with arthritis.

Crohns and Colitis
For our 100,000 friends with Crohns and Colitis Disease — crohnsandcolitis.org.au
National helpline 1800 138 029

Canadian links:
https://arthritis.ca/support-education/support-resources/arthritis-lin
Canadian Arthritis Patient Alliance CAPA https://arthritispatient.ca
Gutsy Support - Gutsy Peer Support - Crohn's and Colitis Canada

Pain Australia
www.painaustralia.org.au
Chronic Pain Aust. 1300 340 357 https://painmanagement.org.au/services

Eczema Support Australia
Eczema Support Australia