Elizabeth Pinkerton Memorial Award

Associate Professor Deshan Sebaratnam is a dermatologist based in Sydney and was the winner of the 2023 Elizabeth Pinkerton Memorial Award.

Deshan has cared for many people living with TSC and was nominated by several members of the TSC Community. One said:

‘Dr Sebaratnam not only looks after my son’s dermatology problems but also makes sure that all other areas of his care as a TSC patient is looked after. He has helped us coordinate many other doctors into his care. He has a genuine care about the patient and goes to all lengths to make sure everything is being managed well.  Dr Sebaratnam always has time to sit and listen to my son. He is always professional and caring. He looks after the whole patient not just the immediate issue that is presented on that day. He is very gentle and patient when doing any procedures and always includes my son in the decisions that need to be made.’

Another added, ‘Deshan has been a major help in my TSC journey. He is very knowledgeable and understanding when dealing with such a complex disease. …In a world where TSC can be very overwhelming, Deshan has been amazing and absolutely deserves this award.’

Deshan said he was very touched and honoured to win the Award.

Kathryn Santamaria is an Epilepsy Nurse Consultant at Royal Children’s Hospital in Melbourne and was the winner of the 2022 Elizabeth Pinkerton Memorial Award.

A member of the TSC Community in Australia nominated Kathryn saying:

‘Kathryn has been a big part of our child’s TSC journey from when he was just 4 months old (he is now about to turn 10). Kathryn has the most beautiful, calming, gentle and fun bedside manner. She is super organised and is always available to assist our family when required. Nothing is ever too much trouble.

Kathryn assists us with not only co-ordinating brain scans, brain surgeries etc but also assists at times with co-ordinating other TSC specialists. She’s so reliable and makes us feel confident that if she is handling something for us, it’ll get done.

Kathryn works closely with Dr Simon Harvey to ensure not just TSC patients, but all epilepsy patients are well taken care of. She is our constant. Our son (and our whole family), adores her. Our son often won’t allow any procedures to be done unless she is there with him. Kathryn has absolutely made a huge difference in our TSC journey and we would be lost without her.’

Kathryn said it is her privilege to support families and patients living with TSC, and that she is truly honoured to be the recipient of such a prestigious award:

 ‘Every day presents new challenges. But it is the relationship that we have with our families and our patients that makes it all worthwhile. This relationship is based on empathy, sorrow, happiness, trust and respect. There are smiles, there are tears, and there is friendship. The strength that our families portray (let alone find), is inspirational. I have always thought of TSC as a journey. This journey is not always smooth. It is filled with speed bumps, roundabouts and many detours, some steps forwards and some steps back. But this journey is a partnership between patients, families and clinicians. I am honoured to be a part of this journey and help to support these amazing people. They are my inspiration. They are why I love my job.’

Dr Freyja Page, a General Practitioner (GP) in Townsville, was the recipient of the 2021 Elizabeth Pinkerton Memorial Award. It was the first time that the award was won by a General Practitioner.

A member of the TSC Community in Australia nominated Dr Page saying: ‘Freyja has been our primary care GP for 4 years and is recognised by Queensland Health as Townsville (and North Queensland’s) only expert in TSC. Freyja took over my daughter’s complex medical situation before she was diagnosed with TSC. It was through her dedication and expertise that we were able to identify and diagnose TSC. Freyja took time out of her own life to learn about TSC with the express desire to be able to treat and manage our daughter in our home town.

Freyja now leads a team of health care professionals, specialists and allied health carers to ensure our daughter gets the care she needs and doesn’t have to travel to Brisbane some 2,000 kilometres away. She has trained health professionals and provided advice and advocated for our daughter over the last 4 years through a difficult diagnosis process and created a management plan based on world’s best practice. We live in regional Queensland and don’t have the same access to specialist care as people in capital cities. Our daughter’s complex health means air travel on a regular basis to Brisbane is not feasible and, as a family, we struggle with the costs associated with her care. Freyja has always found a solution and helped us access what we need locally and most certainly during the pandemic when leaving town wasn’t an option.

Regional and rural medicine needs more doctors like Freyja and I feel that she is the perfect example of a doctor going beyond her job description to care for her patients.’

Dr Nicholas (Nick) Smith, Head of Neurology at the Women’s and Children’s Hospital in Adelaide, South Australia was confirmed as the recipient of the 2020 Elizabeth Pinkerton Memorial Award.

Members of the Australian TSC Community nominated Dr Smith for the award.  He was recognised in particular for the information, advice, alternative options and assistance he has provided to TSC families, giving them confidence as parents to tackle the challenges of the disease.

Dr Smith said he was most honoured to have been nominated by members of the TSC community and considered it a great privilege, in conjunction with dedicated clinical colleagues, to work with and help support the children and families living with TSC, who they meet through their service. He said the families are always a source of inspiration. Dr Smith thanked the Committee and those who had nominated him.

Dr Fiona McKenzie, Geneticist at the King Edward Memorial Hospital for Women in Subiaco, Western Australia was nominated for her long-term perseverance in assisting one TSC adult to search for the  cause of their mosaic TSC and for her considered counselling to families. As one TSC affected family commented, ‘Dr McKenzie counselled us when we were planning to conceive and have our first child. We wouldn’t have had the confidence to go forward without her advice.’

Dr McKenzie said: ‘I feel very privileged to have been nominated for this award, although I wouldn’t say I was any more deserving than many other colleagues around Australia! Thanks to TSA for choosing me. ‘

Dr Orli Wargon, a paediatric dermatologist at Sydney Children’s Hospital and part of the Sydney Children’s Hospital TSC Clinic team. Dr Wargon has been particularly focussed on TSC as a part of the Treatment trial investigating the effectiveness of topical rapamycin for the facial angiofibromas.

Several members of the Australian TSC Community nominated Dr Wargon for this award, including Kate Norris, mum to Liam who has TSC:

‘We’ve been in Orli Wargon’s good care since our son Liam was a baby nearly ten years ago. Participating in Orli’s fantastically well-run rapamycin trial was a privilege. Liam has continued to use his ‘magic cream’ since then and his face is looking so clear. Thank you Dr Wargon, for being at the forefront of research that’s benefiting people with TSC in such a direct way.’

Debbie Crosby, president of TSA and Mum to Alana who has TSC, added:

‘We are very lucky to have Orli as our dermatologist for our daughter Alana. Orli is so knowledgeable, caring and always explains things so well.  Her leading role in the rapamycin cream trial has helped so many families and has such a positive impact in the lives of people living with TSC in Australia.’

Dr Helen Whitford is a staff specialist in respiratory medicine at the Alfred Hospital with specific interests in Lung Transplantation, Pulmonary Arterial Hypertension and orphan lung diseases. She has taken a particular interest in the lung condition associated with TSC, lymphangioleiomyomatosis (LAM).

One woman with LAM nominated Dr Whitford for this award, saying:

‘Helen’s clear, genuine and professional demure at all times offered me complete confidence in her ability as a leading respiratory specialist on the transplant team. My case was a rare case of a rare condition not seen before in Australia. If it wasn’t for Helen’s continual drive to source answers for my rapid debilitating situation I would not be here today. Helen offered person centered care and worked with myself and the team to ensure the best possible outcome. I am forever grateful.’

Dr Simon Harvey is a paediatric neurologist at Royal Children’s Hospital in Melbourne. Simon was presented with his award the 2017 Melbourne TSC Information Day.

One father of a child with TSC nominated Dr Harvey for this award, saying:

‘Dr Harvey has spent many years treating patients with TSC. More recently he has been researching and documenting the effectiveness of tuberectomies in providing seizure control and reduction in seizures as a result of the treatment.

He has been sharing his knowledge of this condition and avenues of treatment across the globe to support and educate other practitioners. This year Dr Harvey is working with a team to understand the Developmental Outcomes of children with Tuberous Sclerosis. The DOTS study is underway.

To our family, Dr Harvey has been a huge support and advocate who has continued to push to provide our son with the best quality of life possible. For this we are forever grateful.’

Dr Anne Halbert was presented with the 2015 award. This award recognises Anne’s decades of work with TSC patients and their families providing clinical care and also contributing significantly to TSC research.

The nomination for Dr Halbert said:

‘Dr Halbert has worked for many years now with children who have TSC and their families. She has a lovely caring compassionate manner and is always so supportive and understanding in her interactions with the children and their parents. She should be congratulated for initiating a trial for the use of topical rapamycin for the treatment of facial angiofibromas in children with TSC. It was instrumental in allowing all children with TSC in Western Australia to have access to the cream and therefore to avoid the need for regular laser treatment usually under general anaesthetic. The difference this made to our life was very significant and cannot be understated. I am sure all other TSC families would support this. I feel that Dr Halbert is very deserving of this award given her commitment to improving the lives of children with TSC and her support of their families.’

Dr Sean Kennedy is a paediatric nephrologist at Sydney Children’s Hospital, Randwick, and Senior Lecturer at the University of New South Wales, where he is an active researcher and teacher. His PhD investigated the role of inflammation in acute kidney disease. Dr Kennedy is experienced in all facets of renal medicine including the management and investigation of urinary tract infection, hydronephrosis, kidney impairment, electrolyte disturbances, haematuria and proteinuria. He has a special interest in the management of children with high blood pressure. He sees patients with kidney disease across the whole spectrum of paediatrics, from babies to adolescents.

Dr Kennedy is a member of the TSC clinic at Sydney Children’s Hospital, where he has worked with numerous families with Tuberous Sclerosis Complex. He has provided support and is an advisor to TSA (Tuberous Sclerosis Australia).

Dr Kennedy’s research interests include acute kidney injury in children; optimising outcomes in adolescents and young adults with kidney disease; renal manifestations of Tuberous Sclerosis Complex; and improving clinical management of congenital anomalies of the kidney and urinary tract.

Dr Kate Riney is a Consultant Paediatric Neurologist and Epileptologist, Chair of the Queensland Paediatric Epilepsy Network, and Senior Lecturer at the University of Queensland Mater Children’s Hospital.

Dr Riney started the TSC (Tuberous Sclerosis Complex) clinic at Brisbane’s Mater Children’s Hospital in recognition of the co-ordination of care required for children significantly affected by TSC. The aim of this clinic is to assist with the diagnosis of TSC and to provide and advisory for children affected by complex issues related to TSC. Dr Riney is highly regarded by her patients, some of whom travel long distances to see her. Besides her busy professional life, Dr Riney is also the mother of two boys.

Dr John Lawson has an extensive portfolio of research into paediatric epilepsy and neurology. His interests include enhancing the diagnosis and management of children with epilepsy and tuberous sclerosis. Publications have include those on new imaging techniques in childhood epilepsy, the effect of epilepsy on quality of life and cognition, the efficacy of the ketogenic diet for intractable epilepsy and a Novartis sponsored multi-centred international trial investigating the use of everolimus for treatment of SEGA in TSC.

Dr Lawson’s commitment to patients with TSC is evident in his role as co-director of the TSC clinic at Sydney Children’s Hospital and as Medical Advisor to TSA (Tuberous Sclerosis Australia).

Dr David Mowat is a senior staff specialist in Clinical Genetics at Sydney Children’s Hospital, the Royal Hospital for Women and the Prince of Wales Hospital. He has qualifications in General Practice, Obstetrics and Gynaecology, Paediatrics and Clinical Genetics. He has contributed to numerous journal articles and book chapters including an article in the Journal of Paediatric Child Health published in March 2011 “An Australian Tuberous Sclerosis Cohort: Are surveillance guidelines being met?”

Dr Mowat and Dr John Lawson are co-directors of the TSC Multi-disciplinary Clinic at the Sydney Children’s Hospital that commenced in 2006.