The Australian POTS Foundation
The Australian POTS Foundation was established in 2021 and is registered with the Australian Charities and Not for Profit Commission as a charitable organisation.
The organisation was founded for the purpose of raising awareness and funds to facilitate research and improve support for those living with POTS in Australia.
How The Australian POTS Foundation Started
Founding director, Marie-Claire Seeley has personal experience as a POTS patient, mother of children affected by POTS and a clinical nurse working in a POTS specific clinic.
Her experience (both personal and professional) highlights the urgent need for improved recognition, diagnosis and treatment options for those affected by this complex syndrome in Australia.
Historically, postural orthostatic tachycardia syndrome (POTS) was considered a benign, transient condition which mainly affected adolescent girls.
It is perhaps these misunderstandings that resulted in a lack of urgency for research into understanding the causes and health impacts of POTS. More recent research has highlighted the collective experiences of individuals around the world who frequently experience delayed diagnosis, mis-diagnosis and sub-optimal treatment options.
Contrary to early beliefs, recent research has confirmed what many have known and experienced; POTS is a chronic condition that, although not visible to others, can cause significant physical, emotional, mental, economic and social burdens for affected individuals and their families.
A brighter future for those living with POTS, through advocacy, support and research
The Australian POTS Foundation is committed to improving outcomes for those with POTS by raising funds for improved research, advocacy and support for those living with POTS.
The Foundation is currently run entirely by volunteers. Beyond minimal running costs, all funds raised will go directly to improving research, education and support for those with POTS in Australia.
Board Of Directors - The Australian POTS Foundation
Chairperson | Amanda Burgan BAppSc
Amanda has extensive experience as a Corporate Manager and a long history in Project Management and now spends her time across a number of volunteering roles.
Having learnt of POTS through her friendship with Claire, and with the increased prevalence of the condition for those who have had a COVID-19 diagnosis, she is passionate about helping those who suffer from the debilitating effects of POTS.
Amanda plans to use her expertise in the organisation of events and large projects to guide the POTS foundation in its goals of fund raise and increasing the awareness of POTS in both the medical and broader community.
Secretary | Nick Baldock LLB and GDLP
Nick is a corporate commercial solicitor of 33 years and a director and/ or adviser to a number of companies and Not-for-profit organisations.
He has given his time to multiple community organisations over the years and has invaluable experience in the charity sector which he brings to our board of directors.
Nick hopes to use those skills to help the Foundation in its efforts to raise funds for research and support for this debilitating condition.
CEO | Marie-Claire Seeley RN, MNurs, PhD Candidate
Clinical Nurse Consultant. Marie-Claire became ill in 1994 after a viral infection and endured a protracted pathway to diagnosis and treatment of her POTS.
Her private research led to an understanding of the familial impact of hypermobility and the complex interplay of this condition with lifelong immune and gastrointestinal disorders.
The diagnostic odyssey she navigated in isolation now provides motivation for her clinical work and PhD research. Marie-Claire has published peer-reviewed articles on novel treatments in POTS.
She has a passion to educate and raise awareness of POTS amongst clinicians and to improve the recognition and treatment of this condition.
She works as a Clinical Nurse Consultant specialising in management of POTS and strives to empower her patients through understanding of their condition and validation of their experience with chronic health.
Director | Jon Seeley BEc, MBA, FAICD, FCA
Company Director, Chartered Accountant. Jon has 30+ years professional experience in the Not-For-Profit and Corporate sectors and serves as a Non-Executive Director for two large international non-governmental organisations.
His first experience with POTS was only weeks after his marriage to Marie-Claire when she was struck down by ‘chronic illness’ after a viral infection. Jon and Marie-Claire have four grown children and two young grandchildren and several of their family members are affected by POTS and its associated conditions.
As a husband, father and carer, Jon has witnessed the prejudice and difficulty those with POTS face when seeking help from the medical system. He has a passion to see better recognition and treatment of POTS for all Australians affected by this condition.
Director | Catherine Cooper LLB GDLP and FAICD
Catherine brings significant expertise in law and ethics, corporate services, risk management and governance to our board of directors.
She has extensive experience in directorship across a large array of fields including those in the Not-for-profit and medical research sector.
Whilst she tells us she “is not clever enough to undertake ground-breaking research into this condition”, we are excited and thankful to have her skills as a professional Non-Executive Director to ensure that the Foundation delivers for all who can benefit from its services.
Treasurer | Peter Burgan BEcon, GAICD, FCPA
As an experienced Senior Executive, Peter brings extensive expertise in financial management, risk management and governance.
He provides his expertise and support to a number of community-based organisations and over the years has given his time to several not-for-profit groups.
In his role as Treasurer, Peter will guide the financial management of the POTS foundation to maximise the benefit of funds for the advocacy, support and research for those living with POTS.
Director | Ali Flynn
With over a decade of experience founding, growing and scaling companies, Ali brings a unique skillset to the POTS board including expertise in strategic planning, executive coaching and marketing.
Ali has a background in Psychology and Emotionally Focused Therapy and has founded multiple fitness studios, one of which she remains owner and CEO. She has previous experience project managing and providing services on number of community-based initiatives, and has volunteered her expertise to several not-for-profit organisations.
The Scientific Committee
Dr CELINE GALLAGHER
Dr Celine Gallagher is an academic nurse with a special interest in dysautonomia and cardiovascular disease. She has held several specialist clinical cardiology roles in the United Kingdom and Australia including management of a rapid access chest pain clinic, a nurse led angina clinic, a nurse led PCI clinic and as a cardiac rehabilitation consultant. Since entering a research career, she has focussed on improving outcomes in arrhythmia, with a special focus on atrial fibrillation (AF) and autonomic dysfunction. She completed her PhD in 2019, which explored the role of alternative models of care delivery and cardiovascular risk factor management to improve outcomes in AF. Her postdoctoral work focuses on translational clinical research, implementing and evaluating interventions to improve outcomes and reduce health care burden in the AF population. Recently she has increasingly focused on opportunities and interventions to improve outcomes in Postural Orthostatic Tachycardia Syndrome (POTS). She has been personally affected by POTS, with her daughter diagnosed with this challenging condition in 2021.
PROFESSOR DENNIS LAU (MBBS, PHD, FRACP, FCSANZ, FHRS)
Professor Dennis Lau is a Cardiologist and Electrophysiologist who obtained his MBBS from The University of Melbourne. Dennis is recognised both nationally and internationally in the field of Heart Rhythm research. having co-authored more than 230 peer-reviewed publications (including international consensus papers) and book chapters. In addition to his focus on cardiacpacing, electrophysiology and ablation procedures, he is a leading specialist in Australia in the management of patients with dysautonomia and postural orthostatic tachycardia syndrome. His clinic in Adelaide currently runs the only national POTS patient registry and manages over 300 patients with this complex syndrome.
ASSOCIATE PROFESSOR CHRIS O’CALLAGHAN
Associate Professor Chris O’Callaghan is a general physician and clinical pharmacologist with appointments at Austin Health and University of Melbourne. A/Prof O’Callaghan is a clinician researcher. He has undertaken laboratory and clinical studies in diverse areas of cardiovascular medicine. Studies have ranged from cell culture experiments that examined the role of adrenaline in regulating synthesis of collagen, to trials that determined the mechanism of cardiovascular neuro-humoral systems in regulating organ blood flow and drug clearance. Along with his colleague, Dr Min Yin Goh, A/Professor O’Callaghan undertook the pivotal examinations that determined the effects of spinal cord injury on blood pressure control. Goh, O’Callaghan and others also published the first study to link joint hypermobility with anorexia nervosa. A/Professor O’Callaghan has a vast experience caring for patients with disorders of blood pressure control, fatigue syndromes and joint hypermobility such as Ehlers Danlos syndrome. He is author of Faint, Foggy, Fatigued & Adrenaline. It’s not in Your Head.