CTDNA GOvernance
committees
Scientific and Medical Advisory committee (SMAC)
The CTDNA Scientific and Medical Advisory Committee (SMAC) formalised in October 2024 has the central aim of ensuring that clinical content and the direction of CTDNA into the future with regard to the prioritisation of key issues and projects that are of a clinical and / or research basis are rooted in deep multidisciplinary discussion, consideration and due diligence.
The SMAC will work alongside the CTDNA Lived Experience Advisory Panel (LEAP).
Members of the inaugural CTDNA SMAC are:
Janna Linke (Chair)
Pharmacist & Medical Writer
Janna is a pharmacist and more recently a medical writer and Masters of Health Policy student. Janna brings to CTDNA a wealth of knowledge including a robust understanding of the Australian Healthcare System, experience gained from working in both public hospital and in private clinical practice as a medication review pharmacist. Janna has a depth of insight into rare diseases that cannot be gained from learning alone, however with a passion for health promotion, health policy research, knowledge translation and in turn evidence optimisation endeavours to never stop learning.
Janna holds Graduate Certificates in Advanced Pharmacy Practice and Management and aims to ensure a strong and cohesive multidisciplinary SMAC for CTDNA is developed and maintained.
Dr Kunal Verma
Clinical Geneticist & Cardiologist
Kunal is leading the charge in the diagnosis and management of Australians with heritable connective tissue disorders (HCTDs), as the first dual-trained specialist to hold accreditations in the fields of Genetics and Cardiology.
Being actively involved in the training of medical students in his academic role at Monash University, Kunal is passionate about improving the understanding of HCTDs for the next generation of medical practitioners – recognising that these not always uncommon rare diseases, are in urgent need of care optimisation across the lifespan for those living with them.
Kunal works in both private and public practice in Melbourne Victoria. With a strong interest in genetic heart disease, it is easy to see how Kunal came to be an expert also in HCTDs.
A/Prof Rosie Dawkins
Ophthamologist & Vitreo-Retinal Surgeon
Rosie brings to CTDNA a wealth of experience from her work in both academic and clinical practice. Expertise spanning in vitreo-retinal surgery including retinal detachments, macular holes, epiretinal membranes, complicated lens problems and more has exposed Rosie to many people living with HCTDs. With a particular focus on those impacted bythe Stickler syndromes where ophthalmic complications are most common, and more widely recognised for their association with HCTDs.
Rosie works in the Victorian Public Health system at The Royal Victorian Eye and Ear Hospital and maintains academic positions as Clinical Associate Professor at The University of Melbourne and is a Senior Research Fellow at the Centre for Eye research Australia (CERA). Rosie has a strong professional interest in the diagnosis, prevention and treatment of inherited retinal diseases.
Dr Jason Lam
Specialist General Practitioner
Jason was originally a professional dancer and artist before collapsing a lung necessitating a change in career path. He studied medicine at Flinders University in South Australia before working in both Plastic Surgery and Dermatology in the Northern Territory and New South Wales Tertiary hospitals.
He is a neurodivergent philomath with interests in surgery, dermatology, sports medicine, dinosaurs, the assessment and management of skin cancer, general medicine, pain, chronic wounds and complex cases. He likes to think of himself as a less pathologic ‘Dr House’ and thrives on diagnostic challenges and seeking answers for complex and difficult to diagnose conditions. He deeply understands the realities of navigating complex, often misunderstood conditions having had lived experience of hypermobility, and many of the commonly occuring comorbid conditions. He has a special interest in Hypermobility, Ehlers Danlos Syndrome, dysautonomia, Mast Cell Activation Syndrome and is proud to be a part of The Australian EDS and HSD Network.
Jason is a registrar with the Australian College of Sport and Exercise Physicians and is involved in medical education, publication and research. He is committed to ongoing professional development and is privileged to work alongside some of the best across many fields.
He currently consults at Bluff Road Medical Centre. Outside of medicine, Jason enjoys time with his young family, riding his mountain bike with questionable skill; producing dreadfully pretentious short films, photography and custom jewellery.
Leanne Scown
HSD / hEDS Expert Physiotherapist
Leanne Scown is a Sports Physiotherapist with twenty years of private practice experience in Victoria, Australia.
Leanne is renowned for her ability to manage a wide range of sporting injuries and complex conditions, including spinal, thoracic, hip, and pelvic girdle pain. Her practice is distinguished not only by her skill in treating these complex issues but also by her deep understanding and special interest in working with individuals who have hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD).
Leanne believes in empowering her patients to achieve and maintain freedom of movement, whether you’re an elite athlete striving to return to peak performance or someone navigating the challenges of chronic pain.
Leanne works collaboratively with individuals, and their care teams on their health journeys towards improved mobility, reduced pain, and a better quality of life, Leanne is a valued member of all multidisciplinary teams she is a part of.
Dr Boris Budiono
Lecturer of Biomedical Sciences (Physiology) at Charles Sturt University
Boris Budiono is a Lecturer of Biomedical Sciences at Charles Sturt University, Wagga Wagga campus and leads the Hypermobility and Mast Cell Diseases laboratory within the School of Dentistry and Medical Sciences, and teaches Molecular Biology, Pathophysiology & Human Genetics.
Dr Budiono received his B.BioMed.Sci (Hons) and PhD in 2017 from the Heart Foundation Research Centre, Griffith University investigating the genetic and immunological changes due to physical activity, and genomic/proteomic effects of forced and voluntary exercise in diabetic mouse models.
Boris’s research continues in focusing on hypermobile Ehlers-Danlos syndrome (EDS) / Hypermobility Spectrum Disorder (HSD), undertaking qualitative studies such as a Delphi study of eminent physical therapists focused on hEDS/HSD, and a national survey of hEDS/HSD in 2021. In the lab, he continues to investigate common co-morbidities such as Mast cell activation syndrome (MCAS) and allergy, with a focus on food allergens and the benefits of polyphenol compounds.
Dr Geoff Lester
Vascular Medicine & Perioperative Physician
Dr Geoff Lester operates the statewide referral clinic for Marfan and Aortic Diseases at The Alfred, Melbourne, providing specialist care for complex non-surgical cardiovascular patients requiring longitudinal surveillance, optimisation, and multidisciplinary coordination.
He is an Australian-trained Vascular Medicine and Perioperative Physician based in Melbourne, and the only Vascular Medicine specialist consulting privately in Victoria. His clinical focus includes complex genetic and acquired aortic and cardiovascular conditions, including Marfan syndrome, Ehlers-Danlos syndromes, Loeys-Dietz syndrome, and Stickler syndrome, with a strong emphasis on care coordination and prevention of complications.
Dr Lester trained across major tertiary centres in New South Wales and Victoria, including Royal Prince Alfred Hospital, MonashHeart, the Victorian Heart Hospital, and The Alfred Hospital. He holds FRACP qualifications in General and Acute Care Medicine (2025) and completed post-fellowship training in vascular and perioperative medicine at The Alfred.
He also holds a Master of Public Health and a Master of Philosophy focused on the epidemiology and economic burden of thoracic aortic disease in Australia. He is an Adjunct Senior Lecturer at Monash University and holds national and international leadership roles, including National Lead of the THINK Aorta ANZ campaign and membership of the International Aortic Network.
He is committed to patient-centred care and to making complex cardiovascular conditions clear and accessible for patients and clinicians alike.
Lived Experience Advisory Panel (LEAP)
Michelle Hamer (Chair)
Michelle Hamer is based in Naarm/Melbourne. She is an award-winning visual artist with a background in architecture, creative collaborations (including with medical research) and consulting. Her professional interest in the nuance of everyday language and socio-political issues is complemented by her lived experience of complex chronic illness.
Michelle has hypermobile Ehlers Danlos syndrome (hEDS). Her experience of the diagnostic odyssey, the challenges that come with the management of hEDS (and its comorbidities) combined with her creative problem-solving insight and pragmatic approach to advocacy position her well to lead this important CTDNA committee.
Michelle is passionate about access and equity in healthcare; and improving the quality of life for those living with HCTD.
Sian Gannon
Sian Gannon is a nurse educator at the Rare Care Centre based at Perth Children’s Hospital. She studied nursing at Edith Cowan University; further specialising in paediatric nursing.
Sian lives with Marfan syndrome and has resided in Perth Western Australia since 2011 after immigrating with her family from England. She is the co-Founder & Co-Host of ‘The Chronic Sisters’ podcast which explores life, and near death, with chronic illness
Sian is passionate about bringing awareness to the specific needs of people and families living with rare diseases.
Brad & Holley Jones
Bradley and Holley Jones live in coastal Victoria with their two young sons. Bradley and their children have all been diagnosed with vEDS – Vascular Ehlers Danlos syndrome (vEDS). Bradley’s diagnosis came in 2019 after he experienced multiple spontaneous aortic and arterial dissections. Bradley family has an extensive history of sudden deaths at early ages and since his and the childrens’ diagnosis, via genetic testing, eight further other family members have since been found to have vEDS.
Bradley is passionate about raising awareness for his journey with chronic/invisible illnesses (he also lives with Chronic Myeloid Leukaemia). He has an Instagram profile called @veds_zebra where he shares his experience. He is also an ambassador for Annabelle’s Challenge, a UK organisation raising awareness for vEDS.
Holley Jones and her sons are First Nations from Yorta Yorta country, She has a background in early childhood education. Holley is a carer to her vEDS family, supports Bradley in his advocacy and is herself a strong advocate for vEDS. Holley and Bradley’s children were diagnosed at the ages of two and two months old.
Finance, Fundraising and Risk Management Committee (FFaRM)
The CTDNA Finance, Fundraising and Risk Management Sub-Committee (FFaRM) was formalised in 2024.
Current members of the CTDNA FFaRM are:
Sue Hutley, Chair of FFaRM – MBA, GAICD, GradDipLibSci, BA.
Christopher Mathews, Chartered Accountant – CA, CTA, MPA, B.Info.Sys, DipFinPlanng.
Kylie Davis – CPA, GAICD, BEc.
Michelle Sutherland – GradCertFraudInvestigations