Our Team

The team making our work possible

The MVA Society is led by a dedicated team of trustees, researchers, clinicians, and advocates, many of whom have direct lived experience of Mosaic Variegated Aneuploidy (MVA).

Together, we combine strategic focus, scientific expertise, and personal insight to drive progress toward treatments, cures, and support for people living with MVA worldwide.

Jonathan

Jonathan Bracey - Founder

Jonathan – JB – is the Founder of The MVA Society and George’s Dad. When George was diagnosed with MVA there was no dedicated support group, charity to focal point for patients, families, or clinicians. We are changing that and putting MVA on the map and on a mission to find a cure for this ultra-rare condition! All the Trustees supporting the MVA Society have a very personal connection with the Bracey family and of course George.

JB has worked in pharma for 20 years, including branded, generics & specialty pharma and during the pandemic was seconded to the Governments COVID Task Force. He is currently Executive Vice President of Corporate Development and Managing Director in the UK at Tanner Pharma Group. Prior to working in pharma JB also served as an Army officer in HM Forces.

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Prof

Professor Anil Dhawan MBBS, MD, FRCPCH

Prof Dhawan is a Consultant in Paediatric Hepatology with a special interest in liver cell transplantation, immuno-suppression after liver transplantation, Wilson’s Disease, neonatal cholestasis and acute liver failure.

Prof Dhawan is a well known internationally and has held or currently holds board level appointments with the European Society of Paediatric Gastroenterology, Hepatology and Nutrition, International Liver Transplantation Society and Cell Transplantation Society.

Prof Dhawan qualified as a doctor in India and has since held appointments in the USA and the UK. He is also the Clinical Academic Group (CAG) Leader for Child Health at King’s Health Partners.

Prof Dhawan was the main advocate for George in putting together a groundbreaking treatment plan to cure his rhabdomyosarcoma. Over this time, Prof Dhawan has become a close friend of the Bracey family and continues to help oversee George’s care. He has is helping the MVA Society now to investigate treatments and improved healthcare outcomes for MVA patients

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Sharon

Dr Sharon Jheeta

Consultant Paediatrician, Imperial College Hospital, London

Dr Jheeta was the first doctor to treat George when he started to become unwell in the summer of 2023 at St Mary’s Hospital. Helping initially to get the best possible outcome with his cancer diagnosis, which involved treatment across multiple London hospitals. She also initiated the R14 genome testing that lead to the MVA diagnosis.

Now a close family friend, Dr Jheeta is also helping support the MVA Society with its groundbreaking work to find a cure for this ultra-rare condition.

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Eleanor

Dr Eleanor Seaby

Ellie is an NIHR Academic Clinical Fellow in Paediatrics working at Chelsea and Westminster Hospital. This is where Ellie met George and the Bracey family, through a routine clinical genetics appointment. Ellie is now helping the MVA Society with their quest to better understand this ultra-rare condition and ultimately find a cure for it.

Previously, Ellie completed a PhD in rare disease genomics at the University of Southampton in collaboration with the Broad Institute of MIT and Harvard.

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Scott

Scott Healy

Scott has dedicated his career to performance improvement in healthcare and life sciences working both within a multinational consulting firm (where he first met Jonathan as a client), and for the last decade as a co-founder of Akeso.

As a Managing Partner, he has led the development of Akeso as an established boutique consultancy committed to improvement in UK health. His project specialisms and areas of interest are systemwide performance improvement, the national and international healthcare supply chain and the use of data to drive tangible and actionable improvement insights. Scott has worked, travelled, golfed, and socialised with Jonathan and the Bracey family for the last decade and considers them, and of course the incredible George as great friends.

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Kate

Kate Diston-Hunter

Kate has been a close friend of Jonathan’s for nearly 20 years and has taken a keen personal interest in George and his recent MVA diagnosis. Kate has worked in the pharmaceutical industry for over two decades specialising in Business Development for the generics sector. She worked for leading multinationals before setting up her own drug development and manufacturing company in 2012. (Lucis Pharma Ltd)

The business specialised in improving formulations of existing products to better match posology and create improved patient compliance. Kate sold her business in May 2023 to Rosemont Pharmaceuticals Ltd where she remained as a consultant until May 2024.

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Rob

Rob Keel

Rob is the Executive Vice President of the Managed Access Programs division at Tanner Pharma Group. He has extensive experience working across the biopharma and non-profit sectors and engaging with the healthcare professional community to bridge gaps in access to medicines for patients in need.

Rob has previously been responsible for the management of the commercial supply chain at AstraZeneca and led business development activities at UK-based Alliance Healthcare. Rob holds an industrial engineering and management sciences degree from Northwestern University and an MBA from Harvard Business School.

In addition, Rob has been a great friend of the Bracey family for the last 20 years and is one of George’s godparents.

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Harry-Leitch

Harry Leitch

Dr Harry Leitch is an Associate Professor and Honorary Consultant in Clinical Genetics and Genomic Medicine, based in the Genetics & Genomic Medicine Department at UCL Great Ormond Street Institute of Child Health and the North East Thames Regional Genetics Service, Great Ormond Street Hospital for Children NHS Foundation Trust.

He has a longstanding interest in germline development – the process by which sperm and eggs are made.
His laboratory also study how defects in early germline development can lead to severe forms of human infertility or, conversely, the development of germ cell tumours. In particular, they are using human pluripotent stem cells to functionally validate findings from genomic investigations undertaken in infertile patients and to establish in vivo and in vitro disease models of germline dysfunction.

He is now expanding this approach to study a broad range of early developmental disorders in children, with the hope that a better understanding of the underlying biology might lead to better treatment options. This is in keeping with Dr Leitch’s clinical work in the Department of Clinical Genetics at Great Ormond Street Hospital, where he specialises in paediatric rare disease genetics.

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Find out more about us

Read more about what we do, the inspiration behind the charity and the people behind it.

About us
What we do
George's story