Key Staff

Sara Hunt, Chief Executive Officer

sara@alextlc.org

Sara’s sons were diagnosed with adrenoleukodystrophy in 2001.

She is proficient in administration and has a Level 3 NVQ in Leadership & Management. Her passion, as well as professional and personal experience, was instrumental for the development of ALD Life into the lead organisation for ALD and AMN in the UK, and its subsequent expansion to Alex, The Leukodystrophy Charity in 2019.

She leads on projects to deliver best practice treatment and prevention within the NHS and is responsible for partnership development and the overall strategic direction of the organisation.

Click here to read Alex’s story


sara@alextlc.org

Karen Harrison, Support Services Manager

karen@alextlc.org

Karen’s twin sons were diagnosed with ALD in 2004 and she joined the ALD Life team in 2013. As an ALD mum, Karen brings significant personal ex­perience to supporting beneficiaries, and works with specialists to ensure best practice in treatments & awareness within the NHS. She regularly presents ALD Life’s work and key messages to professionals and peers and is often requested as a speaker at conferences and events.

Click here to read Karen’s story


karen@alextlc.org

Maria Silva, Accounts Manager

maria@alextlc.org

Maria came to the UK from Brazil in 2001. With a background in bookkeep­ing and accountancy, she joined as a volunteer to improve her English in 2007. She became a shop manager in 2010, promoted to Area Manager in 2014, and was promoted to Retail Op­erations Manager in 2017. In July 2018 she took on a new role as Accounts Manager.


maria@alextlc.org

Natasha Frost, Retail Area Manager

natasha@alextlc.org

Natasha specialises in identifying high end brands, jewellery and precious met­als. She joined ALD Life as a volunteer in 2011 and was employed as a shop manager in 2013. She was appointed Retail Training and Performance Man­ager in 2015 and promoted to Area Manager in 2017, responsible for 14 staff. She regularly volunteers at our Community Weekend and runs ALD Life fundraising and awareness stalls at local events.


natasha@alextlc.org

Chris Webb, Communications Manager

chris@alextlc.org

Bio coming soon


chris@alextlc.org

Caroline Folley, Chief Finance Officer

caroline@alextlc.org

Caroline grew up in Northern Ireland and moved to London in 2005. She built a career as a qualified accountant, holding senior positions at a number of successful companies in the City of London. More recently she has developed her charitable and local interests as a volunteer host for Contact the Elderly and chair of governors for a local primary school. She joined Alex TLC in April 2019 as CFO, combining her professional experience with her passion for supporting the community.


caroline@alextlc.org

Medical Advisors

Dr Jeremy Chataway

After qualifying in medicine at Cambridge and Oxford Universities, and general medical training in London, Dr. Chataway specialised in Neurology over an 8 year period with posts in Edinburgh, Cambridge and London. He was awarded a PhD from Cambridge University in genetic epidemiology of multiple sclerosis (MS) and took up his post as a consultant Neurologist in 2001 at St Mary’s Hospital and The National Hospital for Neurology and Neurosurgery, Queen Square. He is now full time at the National Hospital, Queen Square where he is the MS clinical lead and co-leads the Adult onset Leukodystrophy Group (ALG).

In 2012 he had the honour to be the Chief Neurologist to the Olympic Games in London. He is also neurologist to St Luke’s for the Church of England.


Dr James Davison

James Davison is a Consultant in Paediatric Metabolic Medicine at Great Ormond Street Hospital where he has a focus on organelle-based metabolic disorders.

He undertook his undergraduate and postgraduate medical

and paediatric training in Birmingham/West Midlands UK. He subsequently completed his doctoral research in functional brain imaging in children with metabolic disorders, developing non-invasive brain chemical profiling techniques using quantitative magnetic resonance spectroscopy.

His clinical work at Great Ormond Street Hospital encompasses a broad range

of inherited metabolic disorders, and he helps lead on clinical pathways for Pompe disease, Mucopolysaccharidoses and Peroxisomal disorders.

He enjoys cycling, playing the piano and pipe organ, and reading European reformation and Middle Eastern history.


Dr Florian Eichler

Dr. Eichler is an Associate Professor of Neurology at Massachusetts General Hospital (MGH) and Harvard Medical School. His career has been dedicated to advancing the care and treatment for devastating neurogenetic conditions. Following neurogenetics training at Johns Hopkins with the late Dr. Hugo Moser and residency in paediatric neurology at MGH, he became the Director of the Leukodystrophy Service that cares for patients with an increasing variety of neurogenetic conditions. Dr. Eichler runs a laboratory at MGH that explores the relationship of mutant genes to specific biochemical defects and their contribution to neurodegeneration. To develop novel treatments, his laboratory assesses the consequences of gain or loss of function due to disease causing genes. In 2009 the laboratory identified two neurotoxic desoxysphingoid bases that accumulate in mutant transgenic mice and humans with HSAN1. For this work Dr. Eichler received the Wolfe Neuropathy Research Prize from the American Neurological Association. This has further led to a first clinical trial of substrate supplementation therapy for patients with HSAN1. In 2015, he became Director of the Centre for Rare Neurological Diseases at MGH. The Centre aims to eradicate rare disorders of the nervous system by leveraging the power of biological insights towards design and implementation of clinical trials. Dr. Eichler is the principal investigator of several NIH-funded studies on neurogenetic disorders as well as a gene therapy trial of adrenoleukodystrophy that recently reported on first successful outcomes in the New England Journal of Medicine. For this work, he received the Martin Research Prize from MGH and the Herbert Pardes Clinical Excellence Award from the Clinical Research Forum. Dr. Eichler also serves as chair of the Rare Disease Think Tank at MGH and is founder and president of the international consortium ALD Connect, a patient powered research network that is dedicated to curing adrenoleukodystrophy.


Dr Stephan Kemp

Dr Stephan Kemp is an Associate Professor at the Amsterdam University Medical Centers (location AMC), University of Amsterdam, the Netherlands. He was trained as a translational researcher at Johns Hopkins University/ Kennedy Krieger Institute, Baltimore, Maryland, USA and obtained his PhD in 1999 at the University of Amsterdam. Dr Kemp has more >20 years of experience with adrenoleukodystrophy research and published >80 papers and book chapters on adrenoleukodystrophy. In 1999, together with Dr. Hugo Moser, he initiated the ALD database (www.x-ald.nl), which moved to www.adrenoleukodystrophy.info in 2017. He is scientific adviser of the Dutch ALD patient organisation and the Stop ALD Foundation, member of the scientific board of the European Leukodystrophy Association (ELA) and a member of the board of directors of ALD Connect. Dr Kemp is the project leader of the SCAN study; the pilot for implementing ALD newborn screening in the Netherlands. In 2015, he received the AMC Societal Impact Award (ASIA). His research focuses on lipid metabolism and neurotoxicity.


Dr Robin Lachmann

Dr Robin Lachmann is one of two consultants at the Charles Dent Metabolic Unit, London, UK, where more than 1,500 adult patients with a wide range of inherited metabolic diseases are treated. After qualifying in 1990, Dr Lachmann continued his training in internal medicine and metabolic medicine. He did his PhD research on herpes simplex virus-mediated gene delivery to the brain and post-doctoral work on glycosphingolipid lysosomal storage disorders.


Dr John Livingston

Dr John Livingston is a Professor of Paediatric Neurology at the University of Leeds and Consultant Paediatric Neurologist at Leeds Teaching Hospitals. He leads the Inherited White Matter Disorders Multi Disciplinary Team in Leeds and the national paediatric Inherited White Matter Disorders network. He has had a long standing research interest in neurogenetic diseases and in particular Inherited White Matter Disorders and the Aicardi-Goutieres syndrome.

From 2014 -2017 he was President of the British Paediatric Neurology Association.


Dr David Lynch

Dr David Lynch is a member of the Queen Square Adult Leukodystrophy Group.  He is a specialist registrar in neurology at the National Hospital for Neurology & Neurosurgery and the Royal Free in London.  He completed his early medical training in Dublin, before taking up a Leonard Wolfson Clinical Fellowship at the UCL Institute of Neurology.  He completed a PhD on the genetics of leukodystrophy, and has authored numerous papers on clinical and genetic aspects of these conditions in adults.  He continues to be involved in both research and the clinical care of adult patients with leukodystrophy.


Dr Ming Lim

Ming Lim undertook his undergraduate medical training at the Nottingham University. Following completing his paediatric neurology training in South London, and a period of doctoral research in the neuroscience department of the Institute of Psychiatry (London), he was appointed as Consultant Paediatric Neurologist at the Evelina London Children’s Hospital; and is a Reader in Paediatric Neurology within Faculty of Life Sciences & Medicine, King’s College London. He has a major interest in childhood inflammatory disorders and runs the regional paediatric brain and spine inflammation service. He works   on numerous studies to define childhood central nervous system autoimmune disorders. In addition, he cares for children with a range of neurodegenerative disorders including inherited white matter disorders and has a research interest in the inflammatory mechanisms in neurodegeneration.


Dr Ann Moser

Dr Ann Moser worked alongside her late husband, Dr. Hugo W. Moser for more than 40 years investigating lipid metabolism in inborn errors of metabolism. In 1976 they developed the plasma total lipid VLCFA test for X-ALD. Following Dr. Barbara Migeon’s work to map the X-ALD gene, they were able to clone the gene for X-ALD, ABCD1, in 1993, and developed the ABCD1 mouse model in 1997. Alongside Augusto Odone, father to Lorenzo of the award-winning film “Lorenzo’s Oil”, and together with Dr William Rizzo, they developed Lorenzo’s Oil.

Today, under the leadership of Dr Ali Fatemi, her research team is exploring new ways to treat neuro-inflammation in X-ALD and other nervous system diseases. This team developed, tested, and validated the test methodology for X-ALD new born screening, key to the addition of X-ALD to new born screening programmes in New York, California, Minnesota, Connecticut, Washington, North Carolina and Florida.


Dr Elaine Murphy

Elaine Murphy has worked as a consultant at the Charles Dent Metabolic Unit, based at the National Hospital for Neurology and Neurosurgery, Queen Square since 2008. The unit manages over 1,400 adult patients with rare inherited disorders of metabolism, including adrenoleukodystrophy/adrenomyeloneuropathy (ALD/AMN). The multidisciplinary team includes nurse specialists, a neuro-psychologist, neuro-physiotherapy, neuro-urology and neuro-gastroenterology. Long term follow up after paediatric bone marrow transplant is arranged with colleagues at University College London Hospital. The unit has a long history of participation in clinical trials of new treatments for rare disorders.


Dr Alasdair Parker

Dr Alasdair Parker trained in paediatric neurology in London and is now a consultant paediatric neurologist at Addenbrooke’s Hospital, Cambridge, where he led the East of England Paediatric Neurology Service 2003-12.

He has launched/led regional video-telemetry, movement disorder, neuromuscular, acute brain injury, ketogenic diet, vagal nerve stimulation and neuro-immunology services. He continues to have a great interest in the epilepsies, tuberous sclerosis, microcephaly, movement disorders and efficient investigation of children presenting with neurological disorders. His main research interests include the identification of genetic disorders in children with neurological disease, microcephaly, and the intractable epilepsies. He holds an associate lectureship at the University of Cambridge, leading in the training of under-graduates, junior and senior doctors within paediatric neurology. He was inaugural Chair of the BPNA education committee and National Training Advisor in Paediatric Neurology 2013-17.


Queen Square Adult Leukodystrophy Group

The Queen Square Adult Leukodystrophy Group (QSALG), is a multidisciplinary group that accepts referrals from doctors throughout the UK regarding patients with undiagnosed leukodystrophy / leukoencephalopathy, with the goal of guiding those doctors in arranging appropriate investigations and making a diagnosis.  The team consists of neuroradiologists, neurologists (from cognitive, neuroinflammatory and neurogenetic specialities), and a physician in adult inherited metabolic disease, with support from neurology trainees and administrative staff. A monthly meeting is held to discuss new referrals and view brain scans and other results – with a comprehensive written report sent to each referring doctor.  A bi-annual leukodystrophy outpatient clinic is also held at Queen Square at which patients may be reviewed in person if required.


Dr Gerald Raymond

Dr. Gerald Raymond is a neurologist and clinical geneticist at Penn State Children’s Hospital where he is also a professor of paediatrics and neurology. He obtained his MD at the University of Connecticut and was trained in paediatrics at Johns Hopkins Hospital and Neurology at the Mass. General Hospital. He subsequently received additional training in clinical genetics at the Harvard Longwood Program. Dr. Raymond previously has been director of Neurogenetic Research at the Kennedy Krieger Institute and division director of paediatric neurology at the University of Minnesota where he closely collaborated with the metabolic bone marrow transplant group. Dr. Raymond’s research has been at the overlap of genetics and neurology with specific focus on peroxisomal disorders including adrenoleukodystrophy.


Dr. Rahul Singh

Dr Rahul Singh trained in paediatric neurology in London and is now a consultant paediatric neurologist at Guys and St.Thomas’ Hospital, Evelina London Children’s Hospital, London since April 2015. He specialises in Neonatal and Fetal neurology, Neonatal stroke, Encephalitis/Encephalopathy, Neonatal epilepsies, Channelopathy and also Neonatal Neuromuscular diseases as well as fetal brain malformations. He continues to have interest in inflammatory brain disorders, inherited and acquired white matter diseases in children, IIH and paediatric stroke. He works closely with the white matter disease team and is involved in trials with Opsoclonus Myoclonus syndrome and is setting up regional one stop Leukodystrophy MDT services at Evelina London Children’s hospital. He is postgraduate education lead for neurology trainees and a keen educator, alongside aspiring to spread knowledge of paediatric neurology to the developing world.


Trustee Board

Arabella Warden, Chair

Arabella has over 12 years’ experience working in start ups, corporates and charities. Working as part of the Management Board and alongside CEOs and leadership teams, she provides business advice, project management, strategic input and logistical planning.


Linda Milne, Treasurer

Linda has been preparing the charity’s year end accounts voluntarily since 2004. She was introduced through a friend whose children were diagnosed with ALD and has continued to offer financial guidance and advice throughout the growth of ALD Life. Linda is ACCA qualified and has worked both in industry and public practice.


Aleks Al-Dhahir

Aleks is a public affairs and communications consultant, specialising in healthcare issues. He has several years’ experience advocating for under-prioritised genetic conditions in the UK parliament as well as across European governments. He grew up in London and is also a Trustee of the Citizens Advice Bureau in Southwark.


Gemma Bridge,Trustee

Gemma is a Civil Servant, currently on secondment to UK Research and Innovation, the public funder of R&D in the UK. Gemma joined the Civil Service in 2015 after an eight year career as a research scientist. She obtained her PhD in Cancer Biology at UCL Cancer Institute and went on to work as a post-doctoral researcher at Barts Cancer Institute.


Simon Cork, Trustee

Simon lives in Sheffield and took early retirement to take up the opportunity of taking a mature degree at The University of Sheffield. Initially in IT and Data Communications, followed by an MA in American History. He sits as a lay representative on a number of clinical research panels with the University.


Lucy Penrose, Trustee

Lucy is a chartered accountant currently working in regulatory compliance. She trained in audit with KPMG and then moved into its Forensic practice before moving into regulation. Lucy was previously the Finance Director of a sports charity and lives in South East London.


Thea Watkins, Trustee

Théa Watkins joined Lloyds Banking Group in 1995 and currently holds the role of Head of Branch Management, North America. Based in the New York office, her team is responsible for all Internal and External Communications, as well as the North America Colleague Engagement agenda.Théa has a B.A. (Hons) in Business Studies from the University of the West of England Business School, Bristol, England.


Celebrity Support

Linda Henry

My daughter went to school with Alex, eldest son of Sara, the founder. When we heard about Alex’s diagnosis of ALD, I was fortunate enough to be able to use my influence to arrange a fundraiser by the cast of “Bad Girls”. We were able to send the family to Disneyland, Florida for a dream holiday and what was left over Sara immediately sent to research projects for ALD. This was the start of the journey towards the formation of ALD Life and I am so proud that I was able to help in this.Having witnessed Alex’s relentless deterioration, it makes me sad that there is so little that can be done for sufferers of ALD. I have seen the battles Sara and Alex’s younger brother, Ayden have had to face, and am only too happy to be able to help raise the profile of the charity. It is vitally important to have a comprehensive support group for such a horrific and rare disorder, and have watched the charity go from strength to strength over the years. It is an honour to be involved. This awful disorder has to be stopped, so I urge you to support the charity in any way you can.


Moya Brady

I have been extremely touched by Alex and Ayden’s story.  Anyone who takes just one minute to truly personalise this situation could not fail to be moved and left in awe at such courage and spirit, not to mention hard work!

I am happy to lend my support and hope you will too whether it’s by giving as financial donation, collecting together unwanted clothes for the charity shop, writing a letter to the government or getting ten friends to sponsor you to swim ten lengths at your local pool!

Do anything because anything can help.

Thank you


Sean Gallagher

I met Sara, Alex and Ayden through a mutual friend. When Sara asked if I would be a patron for the charity, I was very honoured to be able to use my career to help such a worthwhile cause.

Before meeting the family I knew nothing whatsoever about ALD and have been devastated to hear of it’s appalling consequences. The charity provides a vital support network for families and gives grants for those most in need.

If you are reading this, I hope you can find it in your heart (and your wallet!) to help.


Sarah Ferguson, Duchess of York

I admire all the hard work and dedication put into the charity and would like to work as an ambassador and raise awareness and support you when and where I can.