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.
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.
by Julie Armstrong
Newsletter April 2026
There are moments in life where you feel a sense of belonging, and this was one of them.
From 6-8th February, members of our Dragon Talks community came together for a special in-person retreat, A Weekend of Belonging, at the Mary MacKillop Retreat Centre on Central Coast NSW. For three days we unplugged our devices and stepped away from our daily routines as we connected with ourselves, each other, and our beautiful surroundings.
From the moment people arrived, there was an ease with being together, some of us reconnecting with familiar faces, and others meeting for the first time. Friday evening set the tone with a relaxed dinner at the Kincumber pub and conversation flowed easily (and maybe some wine, too). We swapped stories, learned about each other and made plans for the future. It was a great opportunity to connect with people on an autoimmune journey, as its often a very lonely one.
There was no pressure to do anything over the weekend other than to take in the beautiful surroundings, and recharge.
We had no idea how much food we’d be getting! All our meals at the retreat were catered for and we’d find ourselves lingering around chatting after each meal only to discover the staff preparing the next meal due soon. All our needs were taken into account, as the centre considered everything. We all felt a sense of calm, not surprising considering the surroundings, as well as well-fed.
Over the three days we discussed important issues such as the rebranding of Dragon Claw to MyFlareUp, as well as our new website, and all the behind-the-scenes hard work done by our volunteers. As everyone in our charity has some connection to autoimmunity, getting feedback is important – to ensure we represent the voices in the autoimmune community. We also spent our time swimming, walking, enjoying the grounds and the history of the centre. The sing-along karaoke night was fun – who knew we had so many musicians among us!
The weekend flew by and it was sad to say goodbye, but some of us learnt something very important – that community matters. And being seen and understood is good for mental health – even a short time away can restore the body and mind. These quality hours together remind us how lucky we are to have this community. We parted with happy hearts and many plans for the future.
We believe our Maple Dragons Dr Charmaine Jones and Alasdair and Susan Cook are planning a retreat in BC. Some Aussie dragons are saving their dollars to attend – assuming petrol prices and living costs decrease! We’re waiting to hear more on the proposed venue and will update our Events page soon!
Newsletter April 2026
Caring for someone living with an autoimmune condition is a deeply human act — one that often happens quietly in the background of daily life.
Whether you’re supporting a partner, family member, or friend, your role matters more than you may realise. And while every situation is unique, there are some simple, foundational principles that can help guide you — especially during times of uncertainty or flare-ups.
Sometimes, the most meaningful support start with the basics
I’m sure most of you know Maslow’s Hierarchy of Needs. His five definitions can basically be broken down into a triangle; our basic human need for food, fire, and shelter. As carers, when caring for our loved ones, we need to make sure that these basic needs are met. Survivalists will tell you that the first thing to take care of is shelter, after which you enable fire, then take care of food.
Shelter
Today most of us shelter in houses, condos, apartments; some of us may even live in trailers or caravans. We are surrounded by floors, walls, windows and covered by lofts and roofs. These features all require some maintenance, and it helps if we make an annual schedule to inspect these features before the seasonal changes we are now experiencing in our parts of the worlds. Assuming some physical ability and competency, we will do our best to conduct these inspections ourselves and come up with a “to do” list. Include the exterior terrain, pools, ponds and sheds/garages. Make sure drains and troughs for excess water runoff are clear. If we aren’t comfortable doing it, then we need to bring in a professional. Some examples would be eaves troughs, second and third story windows, and roof inspections. Check your insurance policy, most insurers now insist on an annual roof and eaves trough inspection done by a professional.
Fire
For fire, this typically means our cooking, heating and cooling infrastructure. Get these checked professionally twice a year, before the cold and hot seasons start. Cooking stoves, BBQs, boilers, water heaters, hot air furnaces, electric baseboards, gas fires and heaters, wood burning fireplaces, wood stoves. Exhausts and flues need to be checked for condition and leaks. You should include electrical, solar and plumbing panels and visible pipes and cables. I would suggest that these tasks be scheduled well ahead of the change in season, and accomplished by a professional. Check fire extinguishers, smoke and carbon monoxide detectors, fire blankets.
Food
If you’re lucky, both you and the person you’re caring for can prepare and cook meals, prepare provisioning lists, help with stocking a larder that has a minimum stock tally. Perhaps the actual daily checking and the physical shopping falls to you. If one or both of you are specific diets, then extra care should be taken with the food items you need, for example, seasonal vegetables and fruit. (Often frozen vegetables and fruit are useful in the shoulder seasons, likely less expensive, and tend to last longer.) We sometimes end up with leftovers, and this is where you and your loved one can have fun creating hearty and nutritional meals – even make new recipes.
It’s too easy to focus entirely on the person you’re supporting, but your wellbeing matters too. As carers, we so often carry a lot quietly.
Try to take moments to:
- rest and recharge;
- ask for support when needed;
- stay connected to your own life and identity;
- acknowledge what you’re doing – it’s significant!
You’re not just support someone else’s journey, you’re on one too. So, check your triangle, stay safe, and keep smiling as you stride into the future!
After MyFlareUp’s research project with Community and Patient Preference Research (CaPPRe) in 2024 found some alarming stats, we needed to explore why so many people in the autoimmune community today still continued to have severe symptoms, despite there being new treatment options available.
We discovered that of the participants surveyed, 45% of them knew nothing about biologics and 56% of them knew nothing about JAKi’s – and 34% of participants were on the same medications and dosages over the past year, despite them reporting moderate to high disease burden. We also found that 52% of participants believed there were no further treatment options available to them, other than what they’d used before.
What are Biologics and JAK Inhibitors?
Biologics is a protein-based medicine made from living cells that target specific parts of the immune system and because it’s a protein, it needs to be kept cool and is usually given by injection. JAK inhibitors (JAKis) is a tablet medicine that blocks Janus kinase signals inside immune cells, helping to reduce inflammation caused by an overactive immune system
Why is Medication Stagnation alarming?
Simply put, because unchecked chronic inflammation can lead to many long-term adverse outcomes, like joint destruction and kidney damage, which is precisely why people with autoimmune conditions need frequent reassessments, and adjustments in medication if necessary, to keep any inflammation under control.
How can you reassess?
Blood tests can track important markers of inflammation, immune activity, and importantly, how well your medications are working. Depending on your condition and the medication that has been prescribed for you, imaging may also be done to check how organs like your kidneys, liver, lungs, or heart are functioning. These tests can help identify changes early, before they escalate.
We designed a Monitoring Tool to help you track
We designed a tool to help you and your healthcare provider identify if your treatment is working. This tool can help make communication easier when you show that you have tracked your symptoms and test results, making it easier to advocate for yourself for any adjustments to you need to your treatment plan. Some adjustments can be like being able to identify if your current medication is working for you.
Remember, any unchecked symptoms of inflammation can be missed when the numbers in your test results seem fine, or when you don’t experience any symptoms – which is why looking at either of these in in isolation can result in your condition not being optimally controlled. Some monitoring goals can be to:
- detect early flares;
- detect any disease progression;
- monitor any organ involvement (kidneys, central nervous system (CNS), skin, lungs and cardiovascular system);
- evaluate effectiveness and safety of your treatment;
- screen for any comorbidities and complications;
- maintain low disease activity;
- to try get into remission.
What is Remission?
Eventually, we’d all like to get our autoimmune condition into remission, but it’s important to know that remission is not considered ‘a cure’. You can be in remission while still on medication, and is when no symptoms or signs of inflammation shows up in your medical or physical tests. You are in remission when you have no symptoms and there are no signs of inflammation in your medical tests or physical examinations. Remission is now recognized by experts around the world as an achievable and meaningful goal for people with autoimmune conditions.
Your Role
Every person with an autoimmune condition trying to manage symptoms should take the time to track symptoms, flare patterns and energy levels. Doing so while also learning to identify triggers will help you build a picture over time. It can be challenging to explain your symptoms to your doctor in a short visit, but being able to show a picture over time can help you play a role in your treatment plan, and being an active passenger in this journey is very important.
Lastly, it’s important to realise that with autoimmune conditions, there is no one-size-fits-all. Regularly communicating with your healthcare provider and clearly clarifying your goals can be an enormous benefit to your treatment plan.
Download the My Numbers Tool below to help you on your journey.
My Numbers
My Numbers Tool
Use this tool to track your tests results and symptoms to help reveal any patterns, which can be useful to advocate for any changes to your treatment plan. This tool was designed to make communication easier with your doctor by showing you have tracked your symptoms and recorded your test results. My Numbers Tool is proudly endorsed by the Australian Rheumatology Association (ARA).
Newsletter April 2026
MyFlareUp was honoured to launch My Pain Assessment Communication Tool (MPaCT) in partnership with Painaustralia at the Parliamentary Friends of Pain Management event on 10 March 2026 at Parliament House in Canberra, Australia. This event brought together patient leaders, clinicians, advocates and policymakers to discuss the future of pain communication in Australia – and the urgent need for reform.
The old “1-10 pain scale” was simply not adequate, and a new way of conveying the affects of chronic pain was needed – one that would put the patient’s voice at the forefront.
Led by MyFlareUp’s Dr Charmaine Jones MD (AOA), Retired Palliative Medicine, Director of Dragon Claw and Co-Facilitator of Dragon Talks, and in partnership with Canadian Chronic Pain Network other dedicated team members, an important new resource for pain communication was created – one that would challenge the old model.
Because pain is personal, and communication should be, too.
It took over 15 months of in-person and Zoom meetings in both Australia and Canada to complete the resource, but it was done. A powerful new patient-led tool was developed by patients for patients, with the aim of understanding the experiences of people living with chronic pain. If a patient’s treatment team could understand how pain affected them – the chances would be higher for them to get the treatment needed. Rather than focusing solely on intensity of pain, this tool would help people living with pain better communicate:
- the impact of pain on daily function, work, and relationships;
- what matters most to the patient;
- what the patient’s goals are for care;
- what support the patient feels they need to live well.
MyFlareUp’s chair, Alison Marshall, moderated a panel and interviewed two patients with lived-experience of chronic pain at the event. There was a panel clinician, Dr Romil Jain, founder and director of ACT Pain Centre who is also a qualified pain medicine physician and Interventional Pain Specialist, as well as Kim Allgood of Purple Bucket and Andrew Thirwell, MyFlareUp’s Lupus Patient Ambassador.
MyFlareUp’s Dr Charmaine Jones said the launch marked a significant shift toward genuine patient partnership in care. “My pain is not a number. Reducing pain to a score doesn’t capture what it takes from our lives – our work, our sleep, our relationships, our sense of self. MPaCT gives patients a structured, safe way to explain their pain in their own words and to identify what matters most to them. When patients can communicate impact and priorities, clinicians can partner with us more effectively. That is the foundation of truly shared decision-making.”
Monika Boogs, CEO Painaustralia, said launching the tool at Parliament House signals growing recognition that pain reform must be informed by lived experience. Painaustralia is the national peak advocacy group representing 3.7 million Australians living with chronic pain and works to ensure their lived experience and voice is part of the national conversation about addressing chronic pain.
“Chronic pain affects one in five Australians, yet too many people feel unheard or reduced
to a number. Tools like MPaCT strengthen shared decision-making and support more meaningful conversations between patients and health professionals. Launching this tool at Parliament House reinforces an important message; the patient voice must be central to policy, funding decisions and clinical reform.” said Ms Boogs.
MyFlareUp is a global patient-led community platform established for people living with autoimmune conditions. MyFlareUp hosts regular online expert talks via Dragon Talks, featuring guest speakers, and online and in-person member meetups where members can connect and share their experiences while learning important self-care practices.
MyFlareUp’s goal is to empower members through knowledge by bringing them closer to shared decision-making in their own treatment plans. While Dragon Claw has recently rebranded to MyFlareUp, the focus remains unchanged – to empower patients to not just survive chronic conditions, but to pursue remission, agency and informed partnerships in their health care.
Members of Parliament and attendees at the Parliamentary Friends of Pain Management event acknowledged the critical role of patient-led initiatives in shaping the future of pain care in Australia, as chronic pain remains one of the most complex and costly health challenges facing the nation today.
Newsletter April 2026
After 10 years as Dragon Claw, we’ve stepped into a new chapter and we’re excited to finally share the news with you.
Over time, we realised that while Dragon Claw carried meaning and history, it didn’t always clearly reflect who we are, or what we do. We are a community of volunteers living with, or caring for, someone with an autoimmune condition. Our focus is on connection, understanding, and support – sharing practical tools, lived experience, and education, through a holistic lens.
After 12 months of dedicated work behind the scenes by our volunteer team, we’re proud to finally introduce our new name – MyFlareUp.
At the heart of everything we do is wellbeing: helping people feel more equipped to navigate the daily challenges and unpredictable flares that come with having an autoimmune condition. As we’ve grown, it felt like the right time for a name that truly reflected our members’ experience.
We’ve learned that people living with autoimmune conditions – across more than 100 different diagnoses – share a common experience: flare-ups, often unpredictable and frequently triggered by stress.
Our new name reflects that shared reality and the day-to-day challenges that connect our community. It was however, important for us to honour where we began. With the help of our creative director, Phil Godsmark, our “cheeky dragon” was born – a small but meaningful symbol you’ll see across much of our content. It represents the quiet strength, resilience, and determination it takes to live with an autoimmune condition, while facing battles that aren’t always visible.
What isn’t changing is what matters most. We’ll continue to:
- host Dragon Talks inviting Expert Speakers,
- invite members to share valuable Member Stories,
- offer practical and supportive resources,
- host informative Events,
- advocate for people with autoimmune conditions,
- partner with organisations globally who share our goals.
This rebrand marks an evolution, not a change in our purpose. Our focus remains the same: to support, inform, and empower our members to move beyond simply managing their symptoms – to a sense of confidence in navigating life with an autoimmune condition, while helping them feel supported by being part of a community.
Same people. Same heart.
Newsletter April 2026
This March 2026 our Director, Gregory Holden, and Patient Advocate, Annette Heininger, represented MyFlareUp (a Dragon Claw Charity initiative) membership at the Women in Life Sciences Luncheon in Sydney, NSW.
The event was co-hosted by AusBiotech and Medicines Australia and brought together over 600 leaders, changemakers and allies to mark International Women’s Day, with its theme #Give to Gain.
Medicines Australia at Women in Life Sciences event March 26
The keynote speaker for the day, Dr Annalisa Jenkins, OBE, MBBS, FRCP, spoke of her experiences as a woman in leadership roles and the importance of the five ‘E’s of leadership: Envision, Engage, Empower, Enable and Execute. Dr Jenkins also spoke of the importance of being ‘lucky’, which she described as opportunity meeting preparation; a key lesson just as easily applied in patient advocacy to continue learning and being ready to take those opportunities to improve your health.
Special thanks given to our hosts for the event, AusBiotech CEO Rebekah Cassidy and Medicines Australia CEO Liz de Somer, for organising a spectacular day of learning and connection.
