Menu

Who We Are

My Flare Up is a charity of people with lived experience of autoimmunity. We’re not run by clinicians or pharmaceutical companies, but are guided by the voices in our community.

We’re governed by a Board of Directors in consultation with our Patient and Caregiver Advisory Committee, and we’re supported by a dedicated group of volunteers who work on specific projects or take on specific roles.

We’re proud to work alongside a number of clinicians who generously support our mission and ensure our community remains a safe and supportive space, steering clear of direct medical advice.

We have connections with like-minded organisations and we’re active members of the Australian Patient Advocacy Alliance (APPA), the Patient Voice Initiative (PVI) and the Australian Genomics Coalition (AGC). These partnerships help us amplify the voices of people living with autoimmune conditions to advocate for better care, and to stay connected with what’s happening across the wider health landscape. At My Flare Up, everything we do is grounded in empathy, respect, science, and a commitment to making life with autoimmunity less isolating, and a lot more supported.

Board of Directors

Each director of My Flare Up has been impacted by autoimmunity in one way or another. This combination of empathy and understanding is what drives their dedication and passion to improve the lives of people living with autoimmune conditions.

Dr Charmaine Jones

Dr Charmaine Jones

Director, PAC Committee Member
Dr Charmaine Jones

Hello, I’m Dr Charmaine Jones

I am a MD (OA) in Retired Palliative Medicine and a Co-Facilitator of Dragon Talks. I also live with inflammatory autoimmune arthritis enthesitis and explore functional medicine. I’m a proud elected member of the American AOA Honour Medical Society where the motto is “be worthy to serve the suffering”. I’m based in Ontario, Canada.

Alison Marshall

Alison Marshall

Chair
Alison Marshall

Hello, I’m Alison Marshall

I bring over 15 years of leadership experience across Australia and UK, with extensive expertise in finance, risk and governance. I am passionate about community impact and my career includes advising organisations, including government organisations and charitable sectors.

I have volunteered with Cana Communities and have served on a local netball club committee. Through my role with MyFlareUp, I’m committed to improving the lives of those affected by autoimmune inflammatory disease.

Susan Hughes

Susan Hughes

Executive Director, PAC Committee Chair
Susan Hughes

Hello, I’m Susan Hughes

I am a passionate writer, career couch, entrepreneur and campaigner. I have extensive experience with business development, relationship management and consulting in private organisations and government agencies. I was diagnosed with severe Rheumatoid Arthritis in 2005 and quickly became disappointed by the lack of professional healthcare support and information available at this time. It was during an arthritis workshop in 2014 that I met Dragon Claw’s founder, Mike Gill, which is when I became a volunteer for the charity, driven by my passion to improve the journey for people living with autoimmune and inflammatory conditions. I held the position of  treasurer until 2021. These days I focus on building meaning relationships and collaborating with key players and industry experts that can help our cause.
Philip Godsmark

Philip Godsmark

Director
Philip Godsmark

Hello, I’m Philip Godsmark

I am a senior creative producer, editor and director with extensive experience in the television industry across Australia, New Zealand and UK. I have led successful campaigns for top free-to-air and subscription channels, corporate clients and not-for-profit organisations. I am a caregiver to family members with autoimmune conditions and hold a Bachelor’s degree (Hons) Biology.
Andrew Thirlwell

Andrew Thirlwell

Director, PAC Committee Member
Andrew Thirlwell

Hello, I’m Andrew Thirlwell

More than 20 years of experience in the life science sector as a health economist in Corporate Affairs across APAC and UK. Currently lead Policy and Public Affairs for Pfizer ANZ and Korea. Andrew is  passionate about influencing policy to improve the health outcomes of patients. Double degree Science and Commerce, Postgraduate degree Epidemiology, Health Economics & Statistics, Graduate of the AICD. Andrew is also an active member of our Patient and Carer Committee (PAC) and supports the Dragon Talks series on Lupus as one of our Lupus Patient Ambassadors.
Marilyn Hay

Marilyn Hay

Director
Marilyn Hay

Hello, I’m Marilyn Hay

I commenced my professional career as a Registered Nurse at KW Hospital, Kitchener, Ontario, where I progressed to senior roles including Regional Director General, Human Resources Development, Canada. I managed a regional social programming operation of 1,000 staff, O&M budget of $42m and program transfer budget of $4.5b. I interfaced with provincial officials, aboriginal leaders and leaders in the public sector to coordinate services, and provide leadership to urban aboriginal programs and homelessness – among other programming areas. Hon. BA, History Wilfred Laurier University, Canada, Military and Strategic Leadership, Defense College (Strategic Studies), Canadian National Defense College.
Kathleen Gray

Kathleen Gray

Director, Treasurer
Kathleen Gray

Hello, I’m Kathleen Gray

I am a seasoned technology executive with a robust background in strategic planning, digital transformation and stakeholder engagement. I currently serve as the Senior Business Partner at an organisation where I play a pivotal role in aligning technological initiatives with strategic objectives. My work focuses on enhancing client relations and fostering partnerships that drive innovation and efficiency within the institution. I hold an Executive MBA from Australian Graduate School of Management (AGSM) and a Bachelor of Science with Honours in Biochemistry and Molecular Biology from UNSW. My academic and professional journey reflects a commitment to leveraging technology to improve organisational outcomes. Beyond professionally, I am a dedicated caregiver to family members with autoimmune conditions which gives me a personal understanding to my role on MyFlareUp’s board.
Demi Zeglinas

Demi Zeglinas

Director
Demi Zeglinas

Hello, I’m Demi Zeglinas

Director of Department 9

I have over a decade of experience across PR, Marketing, Brand Strategy and senior leadership roles.

I launched DVZ Consulting to do what I do best, which is PR, Marketing and Branding. I like to do so by cutting through the noise and uncovering the magic in a brand, where I help strengthen a brand and achieve alignment. I jumped at the opportunity to be a part of MyFlareUp’s cause to strengthen the community’s voice as it is something I’m extremely passionate about.

 

Gregory Holden

Gregory Holden

Director
Gregory Holden

Hello, I’m Gregory Holden

Director

I am a proud Dunghutti Worimi Birpai man and a caregiver for one of MyFlareUp’s members with an autoimmune condition. I was inspired to contribute to the charity and its strategic direction and am keen to share my knowledge in governance and culture for the charity’s Indigenous Health Work to achieve beneficial outcomes for the Indigenous communites. I am a qualified lawyer, notary public, business owner, consultant and governance and strategy professional. I bring 20 years of collective experience and qualifications across a range of roles in the public and private sectors ,and I am passionate about offering my skills to this Board and the autoimmune community.
Susie Zhong

Susie Zhong

Director
Susie Zhong

Hello, I’m Susie Zhong

Chartered Secretary FGIA FCIS MAcc. Juris Doctor and Graduate Certificate in Professional Legal Practice (University of Technology, Sydney); Grad. Dip, Applied Corporate Governance & Risk Management (Governance Institute of Australia), Masters, Accounting (Macquarie University).

Board Members

Past Leadership

Denis Tebbutt

Denis Tebbutt

Co-founder, Chair 2015-2025
Denis Tebbutt

Hello, I’m Denis Tebbutt

I have over 40 years of experience in senior executive leadership roles in Australia, UK and Switzerland, across international software businesses and as an advisor and mentor to innovative new entrants. The past 20 years I’ve been heavily focused on the healthcare sector and its adoption of patient-focused technologies, which included advisory roles with national bodies engaging in the development of electronic health records to support improved patient care. Throughout my career I’ve given time to industry causes and groups to help develop and benefit aspiring entrepreneurs and executives to build stronger Australian technology capability in world recognition. I’m a founding member of Dragon Claw Charity and am committed to raising awareness around the management of hidden disabilities.
Michael Gill

Michael Gill

Founder, Past Chair
Michael Gill

Hello, I’m Michael Gill

Mike established Dragon Claw in 2014 as a website-based community providing support for Rheumatoid Disease, Lupus and Juvenile Arthritis sufferers and their caregivers.

Prior to this Mike worked at Cisco Systems Inc. in senior executive level roles, gaining wide and diverse experience across three spheres: connected online health care, online retail and large enterprise intranet strategies.

Mike has also managed his own consulting business, working in organisational performance, chairing committees, performance coaching and providing business and marketing strategies on healthcare and the internet.

Mike has severe Rheumatoid Disease and fully understands the on-going, up and down journey of a person with a chronic disease seeking support and information about their disease. He enjoys unearthing and sharing good research on his disease and is a Patient Research Partner for the British Medical Journal. Mike continues to work consistently on his own self-care and care coordination which he is passionate about sharing with all patients and carers.

Board Members

Joining My Flare Up has empowered me to ask the right questions at my medical appointments and also to track my symptoms better.

Anne-marie

Systemic Lupus Erythematosus

When I joined My Flare Up and started sitting in the Dragon Talk sessions it helped me feel less anxious about my experiences.

Imraan

Rheumatoid Arthritis

I'm a carer to my mother. Before joining My Flare Up, I felt alone and didn't know where to get what information. Being part of this community and hearing what other carers go through has helped me a lot.

Emily

SpondyloArthritis

Patient Advisory Committee

We have a number of clinicians who are also patients in our Patient and Caregiver Advisory Committee.

Dr Charmaine Jones

Dr Charmaine Jones

Director, PAC Committee Member
Dr Charmaine Jones

Hello, I’m Dr Charmaine Jones

I am a MD (OA) in Retired Palliative Medicine and a Co-Facilitator of Dragon Talks. I also live with inflammatory autoimmune arthritis enthesitis and explore functional medicine. I’m a proud elected member of the American AOA Honour Medical Society where the motto is “be worthy to serve the suffering”. I’m based in Ontario, Canada.

Susan Hughes

Susan Hughes

Executive Director, PAC Committee Chair
Susan Hughes

Hello, I’m Susan Hughes

I am a passionate writer, career couch, entrepreneur and campaigner. I have extensive experience with business development, relationship management and consulting in private organisations and government agencies. I was diagnosed with severe Rheumatoid Arthritis in 2005 and quickly became disappointed by the lack of professional healthcare support and information available at this time. It was during an arthritis workshop in 2014 that I met Dragon Claw’s founder, Mike Gill, which is when I became a volunteer for the charity, driven by my passion to improve the journey for people living with autoimmune and inflammatory conditions. I held the position of  treasurer until 2021. These days I focus on building meaning relationships and collaborating with key players and industry experts that can help our cause.
Linda Gaudet

Linda Gaudet

Patient Advisory Committee
Linda Gaudet

Hello, I’m Linda Gaudet

Linda cares for her partner of 30 years, who was diagnosed in 2015. Linda is retired from a 42-year pharmacy career (BScPhm) in hospitals and the community, and lives in Canada. 

Dr Robin Murray

Dr Robin Murray

Patient Advisory Committee
Dr Robin Murray

Hello, I’m Dr Robin Murray

I am a retired clinical neuropsychologist (PhD) and educator in chronic pain management and conditions that are autoimmune inflammatory. I am an occasional Dragon Claw presenter on psychological topics  and a writer for the Dragon Claw newsletter. I am based in Sydney, Australia.
Cheryl Zubrack

Cheryl Zubrack

Patient Advisory Committee
Cheryl Zubrack

Hello, I’m Cheryl Zubrack

Cheryl is a retired teacher and consultant, and is also a visual artist. She is a Rheumatoid Arthritis patient since 2021 and is based in Winnipeg, Canada.

Alasdair Cook

Alasdair Cook

Patient Advisory Committee
Alasdair Cook

Hello, I’m Alasdair Cook

BSc Electrical, BSc
Aeronautical, Prime carer for partner with MS & other autoimmune diseases for > 40 years. Contributor to Alberta Health Services (AHS) “Aging in Place” study, Working Group participant in AHS Caregivers Program definition. Writer of DC Newsletter “Carers Corner” Canada.

Andrew Thirlwell

Andrew Thirlwell

Director, PAC Committee Member
Andrew Thirlwell

Hello, I’m Andrew Thirlwell

More than 20 years of experience in the life science sector as a health economist in Corporate Affairs across APAC and UK. Currently lead Policy and Public Affairs for Pfizer ANZ and Korea. Andrew is  passionate about influencing policy to improve the health outcomes of patients. Double degree Science and Commerce, Postgraduate degree Epidemiology, Health Economics & Statistics, Graduate of the AICD. Andrew is also an active member of our Patient and Carer Committee (PAC) and supports the Dragon Talks series on Lupus as one of our Lupus Patient Ambassadors.
Kathryn Knowles

Kathryn Knowles

Patient Advisory Committee
Kathryn Knowles

Hello, I’m Kathryn Knowles

PhD Mechanical Engineering. Retired rocket scientist. Retired middle school math/science teacher. Diagnosed RA, autoimmune hepatitis, primary biliary cholangitis, microscopic colitis (2020); polymyalgia rheumatica  (2023). Dragon Claw Volunteer. Albuquerque, New Mexico, USA.

Vu Nguyen

Vu Nguyen

Patient Advisory Committee
Vu Nguyen

Hello, I’m Vu Nguyen

Vu was diagnosed with Lupus 30 years ago and is the founder of Lupus Victoria Incorporated. She is currently studying a post-grad degree in Psychology Sciences as her goal is to help Lupus support groups in their mental health. She works on raising awareness of Lupus nationally and various fundraising initiatives. 

Jill Berensen

Jill Berensen

Patient Advisory Committee
Jill Berensen

Hello, I’m Jill Berensen

Retired registered nurse of 40 years at Royal North Shore Spinal Unit in Sydney, Australia.

Regular writer on Covid19 research (newsletter) and event delegate representing the charity at Adelaide HTAi Conference 2023 and Patient Voice Initiative in Sydney.

Annette Guterres

Annette Guterres

Patient Advisory Committee
Annette Guterres

Hello, I’m Annette Guterres

Retired High School Teacher, Hon Sec Aust. Bomber Command Assoc. Diagnosed with RA in 2016 “RA has made life difficult, but one can still lead an active life.” Sydney, Australia.
Jan Frazer

Jan Frazer

Patient Advisory Committee
Jan Frazer

Hello, I’m Jan Frazer

Jan is a delegate at Australian Rheumatology Association Scientific Conferences New Zealand and Australia. She is a Voice Over Professional based in Melbourne. Jan was diagnosed with Rheumatoid Arthritis in 2018 and is the fittest 77-year-old we know. 

Fay Baudains

Fay Baudains

Patient Advisory Committee, Current Dragon Talks Host
Fay Baudains

Hello, I’m Fay Baudains

Fay is a Nature Connection Educator and Mentor at Educated by Nature. Our delegate at Immune-mediated Inflammatory Disease Summit, Singapore 2024 and attended GafPA/Global Remission with Dr Charmaine Jones in September 2025. Fay is also the current host of the weekly Dragon Talks sessions.
Camille Mc Bride

Camille Mc Bride

Patient Advisory Committee
Camille Mc Bride

Hello, I’m Camille Mc Bride

Camille was diagnosed with Systemic Lupus Erythematosus in 2003 and Discoid Lupus in 2018. In 2024 she took a step bath from her career for health reasons and now spends her time volunteering  online content management and writing when she can. She has a 30 year career in project and finance roles. GradCert (Digital Marketing & Data Analytics), Dip. Management Accounting & Finance

Board Members

wave
wave