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.

Dr Megan Thomas

Specialist General Practitioner

Megan (they/she) is a Specialist General Practitioner (GP) with lived experience and clinical interest in complex chronic illness, specifically EDS, POTS, MCAS, and related conditions.

Informed by their own experiences of misdiagnosis and medical trauma, Megan’s work is person-centred and trauma-informed. She is passionate about equity, diversity, and inclusion, and provides neurodiversity, disability, and LGBTIQ+ affirming care. 

Megan completed their medical degrees at the University of New South Wales, before completing hospital and general practice training in the Illawarra. She co-founded the Illawarra Shoalhaven Gender Alliance (ISGA), a health promotion charity for trans and gender diverse health, and has worked in many clinical, academic, and advocacy roles. 

Megan now provides specialised care to people experiencing hypermobility and related conditions, encouraging patients to remain engaged with their regular GP for routine care needs. She is committed to increasing awareness and knowledge around hypermobility among the medical community through ongoing clinical work, research, education, and advocacy.

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.

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 Annabell’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.