Our advisory boards include expert scientists and families affected by DMD.
Together, they ensure that the money we raise has the greatest possible impact for the DMD community.
Scientific advisory board
Our Scientific Advisory Board (SAB) is made up of some of the world's experts in Duchenne muscular dystrophy (DMD). They bring with them a wide range of essential skills and knowledge bases, including scientific, clinical and drug discovery & development. When scientists come to us with their ideas for new research projects, it is the SAB who apply their experience and expertise to test these ideas, helping to refine them if necessary, in order that Duchenne UK can make informed decisions on funding. We want to fund great science - projects that can improve our knowledge base, treatments that can reach the clinic and improve the lives of people with DMD - our SAB is a crucial part of this work.
Giovanni Baranello is Professor of Paediatric Neuromuscular Disorders within the Developmental Neurosciences Teaching and Research Department at the Dubowitz Neuromuscular Centre at the University College London Great Ormond Street Institute of Child Health. He holds a joint clinical and research position since 2019 and serves as honorary consultant in neuromuscular diseases at Great Ormond Street Hospital, where he is involved in the diagnosis and clinical management of children with different neuromuscular conditions.
Giovanni has been involved as principal investigator in numerous neuromuscular clinical trials, predominantly in the areas of Spinal muscular atrophy and Duchenne muscular dystrophy. His main area of research relates to translational research in neuromuscular conditions, development of outcome measures and biomarkers, natural history studies and long-term studies in patients receiving novel treatments. His research activity is also focused on developing treatments for rare congenital myopathies.
Giovanni completed his degree in medicine, specialising in child neurology and psychiatry, and PhD in Developmental Neurosciences from the Catholic University Medical School in Rome.
His publication list is https://iris.ucl.ac.uk/iris/browse/profile?upi=GBARA20
John graduated from the University College Dublin, Ireland in 1979. He is a Consultant Cardiologist (Electrophysiologist) at the Department of Cardiology, Freeman Hospital, Newcastle upon Tyne, UK, and Senior Clinical Lecture at Institute of Translational and Clinical Research, Newcastle University, Newcastle, based at the John Walton Muscular Dystrophy Research Centre, International Centre for Life in Newcastle.
In 1997, John set up a dedicated supra-regional Cardiology-Muscle Clinic at Freeman Hospital – providing surveillance and treatment for patients with cardiac involvement in inherited neuromuscular disorders.
He served as panel member on the original International DMD Care Considerations guideline project, convened by the US Centre for Disease Control and Prevention, Atlanta, USA (2008-09) and has contributed to various European (2009) and UK Guideline (2018-22) initiatives. He has co-convened or participated in various European Neuromuscular Centre Workshops (2002-23).
In addition to publications on cardiac arrhythmias, he has published extensively in peer-reviewed journals and written book chapters on cardiac involvement in inherited muscle disorders. John was chief investigator for the UK, multi-centre, randomised, placebo-controlled DMD Heart Protection Study (2011-18) and co-author of a Cochrane Systematic Review: Prevention and treatment for cardiac complications in Duchenne and Becker muscular dystrophy and X-linked dilated cardiomyopathy (Cochrane Database of Systematic Reviews 2018, Issue 10. Art. No.: CD009068. DOI: 10.1002/14651858.CD009068.pub3).
John continues to be ‘research-active’ in cardiac aspects of muscular disorders.
Professor Dame Kay Davies, Ph.D., DBE FMedSci FRS is the Dr Lee’s Professor of Anatomy Emeritus and co-Director of the MDUK Oxford Neuromuscular Centre in the Department of Physiology, Anatomy and Genetics at the University of Oxford.
She received a BA degree in Chemistry and a graduate PhD degree in Biochemistry from the University of Oxford.
She was appointed Professor of Genetics in 1996 and then appointed Dr Lee’s Professor of Anatomy at the University of Oxford in 1998. She was founding Director of the MRC Functional Genomics Unit 1999-2017 and co-founded the Oxford Centre of Gene Function in 2000 with Professors Ashcroft and Donnelly, a new institute going from genetic association in human disease to function in the whole organism.
Kay’s research interests lie in the molecular analysis and development of treatments for genetic diseases, particularly DMD. She has published more than 400 papers and won numerous awards for her work and co-founded companies to translate her work to the clinic. Kay is a founding Fellow of the Academy of Medical Sciences and a Fellow of the Royal Society. She was appointed Governor of the Wellcome Trust in 2008 and became Deputy Chair 2013-17.
She was made Dame Commander of the British Empire for services to science in 2008.
Professor Jordi Diaz Manera is Professor of Neuromuscular Diseases, Translational Medicine and Genetics at John Walton Muscular Dystrophy Research Center Life, at the University of Newcastle.
Tina Duong is the Director of clinical outcomes research and development at Stanford University Neuromuscular division. Clinically, she is a physical therapist with 20 years of clinical experience in evaluating, treating and validating clinical outcomes for patients with neuromuscular disease.
Her clinical and research interests are in developing, refining and understanding impacts of muscle imbalances and pathology on function and performance. Her work has contributed to improved understanding and characterization of disease phenotypes impacting clinical trial design and care.
Currently, her area of research focuses on the effect of exercise and physical activity on human movement and disease physiology. She hopes to integrate technology and digital biomarkers as a complementary tool to performance based measures used in trials, in the clinic and remotely.
She enjoys working on collaborative diverse inter-disciplinary teams, mentorship and creating patient focused solutions to improve the quality of life for individuals with neuromuscular disease.
Dr Dada Pisconti is an Associate Professor in the Department of Biochemistry and Cell Biology at SUNY Stony Brook, New York where she moved in late 2018 from the University of Liverpool, UK. Her research aims to understand how muscle stem cells interact with their microenvironment and how these interactions shape the stem cell fate decisions, homeostasis and regenerative potential.
Additionally, she studies the molecular pathogenesis of muscular dystrophy and ME/CFS. Her work has led to biomarker clinical trials and patents, as well as industrial collaborations.
She earned her PhD from the University of Bari School of Medicine and undergraduate degrees from the University of Perugia. She held a prestigious Marie Curie Fellowship from the European Union.
Dr Isabelle Richard PhD is a research Director at the Centre national de la recherche scientifique (CNRS). She is heading the Muscular Dystrophies team within the INSERM U951 in Genethon, Evry, France.
She is an expert in the molecular genetics of neuromuscular diseases. She has published more than 185 papers on genetics of muscular dystrophy, identification of pathophysiological mechanism of the diseases, identification of biomarkers, development of animal models and proof-of principle of therapeutic strategies especially gene therapy.
Isabelle is now involved in translating different gene therapies for muscle diseases into the clinics and has recently co-founded the company Atamyo Therapeutics with this objective in mind with a first clinical trial initiated in 2022.
Originally from Italy, Dr Ricotti is a Professor of Paediatric and Child Psychiatry. In 2010 she joined the Dubowitz Neuromuscular Centre, at the University College London (UCL) Institute of Child Health and Great Ormond Street Hospital, where she currently holds a position as Honorary clinical Lecturer.
She is a dedicated clinical researcher, having contributed to the development of novel advanced therapies, biomarkers and international natural history registries. She has for many years been interested in the health applications of artificial intelligence and machine learning in a collaboration with the National Institute for Health and Care Research Biomedical Research Centres at UCL and Imperial College London, which yielded two papers in Nature Medicine.
In 2019 she co-founded Dinaqor AG, a Swiss gene therapy company, where until 2022 she was responsible for the company’s overall scientific strategy with a focus on the translational activities, which included a lead compound now in Investigational New Drug Application (IND) enabling studies plus a pipeline of three other gene therapy products.
She is co-inventor of five patents. She is a co-founder and director of three UK-based start-ups.
Carina Schey has many years of both pharmaceutical industry and clinical pharmacy experience.
She is a consultant health economist based in Switzerland, with a doctorate focusing on assessing the value-add of orphan drugs, awarded by the University of Groningen in the Netherlands. Carina’s motivation is to improve patient access to much needed treatments, improve patient well-being and enhance the sustainability of healthcare service provision.
Prior to specialising in health economics, Carina was a clinical pharmacist with a special interest in rare diseases, having worked at several leading London hospitals. Between 2002 and 2008, Carina designed and implemented patient-focused homecare services on behalf of the UK NHS to patients with rare diseases.
Carina has published several peer-reviewed articles and abstracts. Notable speaking engagements include the European Parliament ‘Patients’ Rights Day’ and ‘The Chronic Diseases’ conference, and several other rare diseases conferences. In addition to being an international speaker, she facilitates and moderates at many professional conferences and for TedX events.
Carina sits on the scientific advisory panels for several charities, and as non-executive director for healthcare organisations.
Professor Tedesco is a clinician-scientist with expertise in paediatric neuromuscular diseases and muscle regeneration. He is Professor of Neuromuscular Biology and Regenerative Medicine at University College London, Senior Group Leader at the Francis Crick Institute and Honorary Consultant Paediatric Neurologist at Great Ormond Street Hospital for Children in London, UK.
Professor Tedesco graduated in Medicine and Surgery with honours at the Sapienza University of Rome (Italy) studying muscle stem cell biology at the Institute Pasteur (Paris, France); he was then awarded his PhD at the San Raffaele Scientific Institute of Milan (Italy) and completed his clinical specialty training in paediatrics and paediatric neurology in London.
Professor Tedesco was awarded several major fellowships and research grants, including an NIHR Academic Clinical Fellowship followed by a Clinical Lectureship, a European Research Council (ERC) Starting Grant and the leadership of a large 9.5M EUR Horizon Europe consortium. He received the 2015 Young Investigator Award by the European Society of Gene and Cell Therapy, the 2020 Simon Newell Investigator of the Year award by the Royal College of Paediatrics and Child Health and the 2021 MacKeith Prize by the British Paediatric Neurology Association.
The Tedesco laboratory studies skeletal muscle regeneration, focusing on the development of novel therapies for incurable neuromuscular disorders of childhood. They work pioneered the use of cutting-edge technologies such as human induced pluripotent stem (iPS) cells, artificial chromosomes and tissue engineering for advanced disease modelling and gene/cell therapies of muscle diseases. Current projects investigate iPS cell-derived myogenesis for complex neuromuscular disease and therapy modelling, as well as the use of small molecules to improve myogenic cell delivery. The overall goal of the Tedesco laboratory is the translation of regenerative strategies into novel therapies to improve outcomes for children with neuromuscular disorders.
Dr Graeme Wilkinson is Head of Virtual Research and Development at the Medicines Discovery Catapult. A pharmacologist by training, and with over 30 years’ experience in the industry, Graeme has a track record of successfully leading drug discovery and capability enhancement projects in large pharmaceutical and start-up across many disease areas. In addition, Graeme has also significant experience of instigating and leading open innovation, and drug repositioning programmes.
Graeme’s career began as a graduate at Roche Products where he was involved in developing new models of respiratory and cardiovascular disease. From there he moved to the Department of Cell Physiology and Pharmacology at the University of Leicester to study for a PhD in molecular pharmacology and was among the first to demonstrate the role of ATP as an important extracellular regulator of endothelial cell function. This was followed by a post-doctorate at the Glaxo Institute of Pharmacology within the University of Cambridge studying the differential pharmacology of the neurotransmitter somatostatin.
During this time Graeme had the fortune to work with and be mentored by significant leaders in applied pharmacology including Professors Mike Boarder, Paul Leff and Pat Humphrey. Graeme then joined the pharmaceutical industry with Astra at their Charnwood site in Loughborough focusing on the role of chemokines and their receptors in inflammatory diseases and disorders, and helping establish the target validation group that leveraged the emerging high throughput and molecular technologies.
Soon after the formation of AstraZeneca Graeme moved to the Alderley Park site to lead a capability in membrane protein biology and mechanism of action studies, applied to projects across all disease areas. He subsequently moved into global roles leading compound reprofiling and clinical drug repositioning and open innovation activities, which resulted in new pre-clinical projects and clinical candidates as well as the AstraZeneca-MRC compound sharing initiative and leading clinical studies in respiratory, auditory, and wound healing conditions.
Between 2014 and 2017, Graeme worked independently to develop a portfolio of drug discovery projects through the principles of open innovation and virtual working raising over £1m in non-dilutive funding, in addition to acting as Research and Development Director for start-up companies in the urology and auditory fields.
Graeme joined the then newly formed Medicines Discovery Catapult with responsibility for establishing a capability for the provision of drug discovery enabling advice helping UK life science small and medium-sized enterprises and academic entrepreneurs to create compelling project plans and deliver competitive and groundbreaking new medicines. In addition, Graeme is a member of the Medicines Discovery Catapult senior management team and is strategy leader for the healthy ageing thematic area.
Patient advisory board
Patient and parent involvement is at the heart of Duchenne UK. We believe that patients should be at the heart of drug development. Our Patient Advisory Board (PAB) is made up of parents of children and young adults of different ages, who advise and give feedback on the projects we are considering for funding.
Maggie has 5 children – Efren, who has DMD and his siblings Caspar, Mireille, Nissa and Aleka. They live in Trafford in Greater Manchester. Efren (often known as Renzo) was diagnosed with DMD in December 2014.
At the time Maggie was managing a pre-school and completing a degree in childhood youth studies. She now works part time as a childcare practitioner at a childcare centre, as well as home educating her four youngest children.
In January 2015 Maggie and Aleka set up Raise for Renzo as a way to share Efren’s experience of living with DMD with family and friends, as well as the wider community through social media. They also fundraise for DMD charities and share information to raise awareness about the condition.
Maggie is interested in trials and treatments being available as widely and quickly as possible, and would like to see more trials open to non ambulant boys and men.
Pauline worked for several years as a laboratory technician before starting a family. Pauline’s youngest son Josh was diagnosed with DMD when he was 5. Josh, now 18, has an older brother Ryan, and older twin sisters Ellie and Lauren.
Since Josh’s diagnosis, Pauline has thrown herself into numerous fundraising activities, and worked in Advocacy and Fundraising. Pauline is currently studying a BA in English and Creative Writing, and is part owner and Director of an access information website, due to launch next year.
Pauline has a particular interest in trials for non-ambulant participants, and for adults living with DMD.
Katrina has a son, Alexis, with DMD and three daughters, Eva, Beatrice and Elizabeth. Alexis was diagnosed with DMD at six months old. Following this Katrina left her career in administration to become a full-time mum and home educator.
In 2015 Katrina started Duchenne Parents Zone, an internet support group for parents of children with DMD in the UK and Ireland. Katrina also created and manages Duchenne Awareness UK, a Facebook page aimed at raising awareness of DMD. Katrina is passionate about providing support for families affected by DMD and has an interest in DMD genetics.
Vici has been involved in the DMD community for 12 years. She has a son Zak, who has DMD, and two girls, Eva and Sian.
Zak was diagnosed at 18 months old, and since then, Vici has campaigned and raised money for DMD research. She left her job in 2005 as a Children’s Services Manager for a childcare company and began work as PPUK’s (now Action Duchenne) first fundraiser. She worked with them to lobby parliaments in England, Scotland, Wales and Northern Ireland.
For the last 6 years, Vici has worked as a Direct Payment Support Officer with a disability charity and city council, supporting people to use their social care budget, as well as giving information and advice on independent living. Vici is also a founder and trustee of Duchenne Now.
Vici is committed to seeing treatments for all, in the shortest time frame possible. She is particularly keen to see non-ambulant trials set up.
Divyesh joined IWG LLP, a firm of commercial lawyers based in Holborn in London in 1996 when he qualified as a solicitor, and has been a partner since the year 2000. He specialises in commercial litigation and dispute resolution. He is also father to Raul, who has DMD. In 2007, soon after Raul was diagnosed, he became a trustee for Action Duchenne, in order to support, in every way possible, those carrying out essential work to find treatments for DMD, and those working to improve the lives of the children living with the condition. While he has not been a trustee of Action Duchenne for a number of years, he (and IWG) have continued to support and work with DMD charities and the DMD community.
Justine and Alex’s third child, Jamie, was diagnosed with DMD, just after his first birthday. At this time, Justine gave up her career as a stockbroker, to become a full-time mum. Alex has been in finance for nearly 20 years, and in 2015, with the help of friends and family, Alex and Justine organised a triathlon, Tri4Duchenne, which raised over £350,000 for Duchenne UK.
Lisa Kuhwald is one of Duchenne UK’s Advocacy Support Officer – this is a voluntary role.
Lisa is mum to 4 boys, Oscar, Casper, Felix and Herbie. They live in Altrincham near Manchester.
She studied Chemistry at the University of Hull and worked as a teacher and in the pharmaceutical industry. Lisa now runs the family property business in Manchester, founded by her husband Karl.
They set up Team Felix in 2013, after their son Felix, then 2, was diagnosed with DMD. The goal is to raise as much money as possible, and as quickly as possible, to fund research into treatments to end Duchenne.
Fleur is a health economist and has worked in the pharmaceutical industry for over 20 years, across Clinical Research and Health Outcomes. Her current role is at GSK is Therapeutic Area Head in Global Value Evidence and Outcomes. Her son, Dom, has DMD. Fleur also chairs the Project HERCULES Steering Group.
Nick is the parent of a son, Saul, who is living with DMD. He was the founder member and former CEO for the charity, Action Duchenne. Nick has an honours degree in Chemistry and a PGCE. He established the first patient clinical trial database, the DMD Registry, and is currently a member of its advisory board. He is also a member of the Treat NMD TACT committee for evaluating new treatments and medicines for DMD. From 2005 until 2012, he was a member of the MDEX Consortium SAB, which supported the first clinical trial for exon skipping using morpholinos with boys living with DMD in the UK. When CEO at Action Duchenne, Nick established and contributed to the first of many DMD International Research Conferences in the UK and he also set up the APPG for Muscular Dystrophy in the Houses of Parliament. He has recently campaigned with families to win approval for the PTC genetic therapy Translarna with NICE and NHS England.
Becky Burnett is mother to Tom, who has DMD, and Amy. She graduated from Oxford University and worked in London and Hampshire as a lawyer, specialising in medical negligence. Shortly after Tom was born in 2007, she and her husband Gary, spent 3 years self-building their dream home – Tom was diagnosed with DMD a few weeks after they had moved in.
Tom has taken part in 3 clinical trials at Great Ormond Street Hospital, two for an experimental drug for DMD and one for a distraction device used when giving blood. Her experience during this time has left her in no doubt that the patient voice is not being listened to by the drug companies and she believes passionately that it should be the primary consideration at every step of drug research.
Janet is Senior Lecturer in Special Education at the University of East London, teaching on both undergraduate and postgraduate programmes. In 2001, she co-founded the charity, Action Duchenne, with her partner, Nick Catlin, after their son, Saul, was diagnosed with DMD. From 2008 to 2011, Janet ran the lottery-funded ‘Include Duchenne’ project, which worked with over 60 children with DMD and their schools and families across the UK, to improve reading and learning skills. The project won the 2011 National Lottery Award for Education.
From 2011 to 2016, Janet co-managed the lottery-funded ‘Takin’ Charge Transition to Adulthood’ project, which worked with 80 young people with DMD, aged between 14 and 19 years, and their families – supporting teenagers with DMD to be aspirational about their future. Through the community interest company, Decipha, Janet has worked with children, with a range of learning and behaviour difficulties, and led a Department for Education-funded Leadership programme for young adults with life-limiting impairments.
Janet is currently involved in research, which is exploring the experience of young people with life-limiting impairments and their views on the new SEND reforms in a time of austerity. She has edited the book ‘A Guide to Duchenne Muscular Dystrophy : Information and Advice for Teachers and Parents‘, which is free for families affected by DMD in the UK.
Sejal Thakrar’s son Shiv was diagnosed in April 2014. Following diagnosis, Sejal gave up her career as a Customer Intelligence Data Analyst within the Telecommunications sector.
In January 2015, along with her husband Manoj, they set up ‘Smile with Shiv’ to work closely with the DMD community, in raising awareness and funds for DMD charities, as well as advocacy work.
Sejal has used her experience as a Data Analyst to assist in the analysis of surveys, carried out as part of our community engagement work, to better understand what patients and caregivers want from care, research and clinical trials.
Rachel and Gareth’s son, Harry, was just two and a half years old when he was diagnosed with DMD. At that time, they were expecting their second child. Luckily they had a healthy girl – Grace. Rachel decided not to return to her job in the Housing industry and to be a full-time mother. Gareth continues to run his own nightwear business. Gareth has taken part in the Duchenne Dash twice, and together, they continue to fundraise for Duchenne UK, in the hope that one day there will be a cure.
Jaspal is the mum of Taran (11) and Kirath (9 – pictured) – Kirath was diagnosed with DMD just before his 4th birthday. Jaspal is an Equality and Diversity Practitioner with over 20 years experience in the field; after having graduated in Law, from the University of Manchester, she worked at the Commission for Racial Equality, advocating equality of opportunity for minority ethnic groups. She currently leads on Equalities at Coventry City Council.
Since Kirath’s diagnosis, Jaspal has championed the need for early access to medicines and was involved in lobbying for the approval of Translarna, for which Kirath was eligible. She is also a passionate advocate for improved psychological support for patients and families.
In July 2017, Nick and Kirsty received the heartbreaking news that both their sons, Owen (then 3 years old) and George (9 months), have DMD. Nick is an orthopaedic surgeon and Kirsty is a research nurse, both working in Glasgow. They are determined to raise awareness and funds for research into a cure for this devastating disease, and have set up Project GO with these aims. They are particularly focused on supporting the development of the DMD Hub, to expand clinical trial capacity for boys throughout the UK.
Andrew is the father of William, who was diagnosed with DMD in 2016 at the early age of 1, after a random blood test. Andrew graduated from the University of Derby with a BA (Honours) Degree in History, before becoming a director of his family-run business. Since William’s diagnosis, Andrew has thrown himself into fundraising, setting up William’s Fund with Duchenne UK, to contribute in the quest to find meaningful treatments, and eventually a cure for this condition.
Anna is mum to Jack (aged 5). She studied Business Administration at Coventry University and also obtained her purchasing qualification, MCIPS. Anna has worked in the Healthcare industry for 9 years and is currently a Procurement Manager for pharmaceuticals. She set up Jack’s Mission in March 2016 after their son Jack, then 2, was diagnosed with DMD, with the key objective of raising as much awareness and funds as possible to help to find effective treatments.
Laura has two sons – Louis, age 6, and Jenson, age 5. Louis was diagnosed with DMD in December 2016. Laura and her husband Phil set up Lifting Louis (a family fund with Duchenne UK) to help support our work to end Duchenne. Laura and her family live in Lancashire and she has previously worked in the travel industry.
Ana’s son Gabriel was diagnosed with DMD just before his 4th birthday.
With the support of family and friends, she set up ‘Hope for Gabriel’; a small charity run by kind volunteers, with the aim of raising funds to aid DMD research and to raise awareness of this disease.
Her main interest at the moment is to raise funds towards the expansion of clinical trial capacity in the UK, as she believes this project will benefit everyone living with DMD, as well as giving more children/young adults with this disease the opportunity to take part in clinical trials. She also has a great interest in the link between DMD and learning difficulties and supporting families dealing with the practical side of having a child with special educational needs.
Kerry has two boys, George and Jack. In November 2016 George was diagnosed with DMD at the age of 8.
Kerry and her husband John have thrown themselves into raising awareness and fundraising for DMD charities, and set up ‘Cure4George’ (a family fund with Duchenne UK) to help support their work to end Duchenne.
Kerry and her family live in Essex and she has over 30 years senior leadership and project management experience in the banking industry. John retired from his career in Banking to become a full time Dad, and has supported groups for Duchenne Dads. John has completed the Prudential Ride London 3 times, and the family run an annual ‘Cure4George’ Golf day.
Alex and his wife Lisa have 2 boys, Ben and Zak, and live in Berkshire. Ben, who has DMD, was diagnosed in 2017 soon after his 4th Birthday when Zak was only 4 months old.
Alex has spent more than 20 years creating and managing high performing teams in the service industry in a number of countries and across a range of sectors including hospitality, retail and guest services.
Since diagnosis, Alex has invested time in supporting DMD charities through fundraising and awareness campaigns through Ben vs Duchenne on Instagram, Facebook and Twitter, where he shares Ben’s life experiences both medical and social.
Alex and his family have set up a family fund, Ben vs Duchenne, to support Duchenne UK’s investment into research.
Beccy and Alex are parents to Archie who was diagnosed with DMD in the Summer of 2017, when he was 3 years old. Six months after that dark day they set up a family fund ‘Archie’s March’ and threw themselves into fundraising with the hope of changing the future for all those affected by DMD.
With the support of family and friends, Beccy and Alex hope to continue fundraising so that Duchenne UK can achieve their goal of ending Duchenne.
Sara’s youngest son, Oscar, was diagnosed with DMD in October 2017 when he was 7 years old. Shortly after diagnosis, Sara and her husband Oliver committed to riding the Duchenne Dash and to supporting Duchenne UK with its aim of finding life changing treatments for this cruel disease .
Sara lives in Bristol with her husband Olly, their three sons, Ben, Harry and Oscar, and George the dog. Although Sara now works in HR, she is a qualified lawyer and practised in the field of professional negligence and insurance law for many years.
Jo Eames is mother to William & Phoebe and wife to Matt. William was diagnosed with DMD in January 2016 just over the age of 3. The family set up their unincorporated charity Defending William Against Duchenne in 2018 to raise awareness of DMD and William’s journey. In 2019 they raised over £50,000 and Jo project managed the huge adaptations to totally futureproof their house to make it the most wonderful home with no obstacles for William. Jo now offers advice on adaptations to other parents in similar situations.
Jo has been involved with DMD charities since William’s diagnosis, serving as a trustee of Action Duchenne for 18 months earlier in their journey. With the support of family and friends they have raised over £30,000 specifically for research across several charities. The families focus is now research into gene therapy to find a cure for DMD.
Jo works as a consultant within education part time so that she can be a mother to both children whilst also overseeing William’s care and wellbeing.
Tony Levene set up a charity Duchenne Now in 2012. His amazing son Joey who turned 16 in June 2021 has DMD. Tony is a figurehead in the DMD community, always supporting families and boosting morale. Duchenne Now supports Duchenne UK and Tony’s company IKONIC provides complimentary IT support to Duchenne UK.
Development Board
Our Development Board is composed of committed donors, called Founding Patrons. Founding Patrons support us in our fundraising goals through donations, corporate support, connections and advice.
The role of the Development Board is to help Duchenne UK secure regular income, which gives us the freedom to commit funds on a repeat basis to the most promising projects. With this security, leading scientists and doctors can spend less time chasing funding, and more time in research and drug development.
Matt is Managing Partner of Talbot Hughes McKillop, a restructuring advisory firm. He previously worked at Andersen, in the consulting practice. Matt earned a BA from Corpus Christi, Oxford in Psychology and Physiology and is a Fellow of the Chartered Institute of Management Accountants.
Matt is a keen cyclist and was introduced to Duchenne UK by Ben Monro-Davies in 2016. He has completed two Duchenne Dashes and the Dash Max 2017 from London to Monaco. Matt is also non-executive director of SH:24, a Community Interest Company, focused on bringing NHS services online.
Peter is the Founder & CEO of UK clothing brand Jack Wills. Founded in 1999 and grown organically from a single £40k investment, Jack Wills is now a global brand trading from c.100 company owned stores in Europe, North America and Asia, with franchises across the Middle East. As an expert in brand communications, Peter is considered to be at the leading edge of multi-channel retailing, social media and viral marketing. As well as supporting Duchenne UK, Peter is also a major supporter of Malaria No More UK.
David graduated from Magdalene College, Cambridge University in 1991 and joined the investment bank UBS (SBC). He is UBS Investment Bank’s Global Head of Financial Institutions and the UK Country Head for UBS Group as well as being a UBS Limited board member, a member of the British Bankers Association board and of the Association for Financial Markets in Europe board. David is a trustee of the Clement James Centre in North Kensington and a member of Business in the Community’s Education Leadership Team.
Anthony is co-head of Investment Banking Services in EMEA and co-head of UK Investment Banking. He is a member of the Partnership Committee. He joined Goldman Sachs as a managing director in 2007 and was named partner in 2012.
Prior to joining the firm, Anthony spent seven years at Citigroup. Earlier in his career, he qualified as a corporate solicitor at Freshfields in London. Anthony earned a BA in Modern History at Worcester College, Oxford University, and a CPE and LPC degree from the London College of Law.
Anthony is a member of The Sutton Trust strategic advisory and development board.
Ben Monro-Davies is a TV journalist currently working for GB News. He previously worked at the BBC, Sky News, and Channel 4 News, where he first met the founder of Duchenne UK, Emily Reuben. Through the charity he has become a reluctant but regular cyclist, completing four Duchenne Dashes to Paris and one Tour de Yorkshire.
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