Our team
and trustees
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Meet the team
Founded in 2012 by Emily Reuben OBE and Alex Johnson OBE, two mothers of boys with Duchenne muscular dystrophy, Duchenne UK charity has grown quickly since then. We bring together a diverse range of expertise, united by one mission: to improve the lives of everyone affected by Duchenne.
Our team combines experience in research, advocacy, technology, communications and fundraising to drive progress and deliver real impact. By working collaboratively with families, clinicians, scientists, and industry partners, we ensure that every decision we make is focused on improving quality of life for the Duchenne community.
Emily Reuben OBE – Founder and Chief Executive of Duchenne UK
Emily founded Duchenne UK after her son was diagnosed with Duchenne. A graduate of Oxford University and former Channel 4 News and CNN International journalist, Emily launched the Duchenne Children’s Trust in 2012, which later merged with Joining Jack to become Duchenne UK.
Emily is a leading advocate for patients, representing the community at the U.S. Foodand Drug Administration (FDA), European Medicines Agency (EMA), Medicines and Healthcare products Regulatory Agency (MHRA), National Institute for Health and Care Excellence (NICE), and Scottish Medicines Consortium (SMC). She has servedon the Association of the British Pharmaceutical Industry (ABPI) PatientAdvisory Council, MHRA consultative forums, and the Innovative Licensing andAccess Pathway (ILAP) Steering Group, and now sits on the board of the Association of Medical Research Charities (AMRC).
Emily was awarded an OBE in 2023 for her services to people with Duchenne.
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Alex Johnson OBE – Founder of Duchenne UK and Chief Executive of Joining Jack
Alex founded Duchenne UK and the charity Joining Jack with her husband, former rugby league player Andy Johnson, after their son Jack was diagnosed with Duchenne in 2011. Through Joining Jack, Alex helped create international awareness for Duchenne with innovative campaigns like #Link4DMD and has played a leading role in global advocacy.
She has served on the board of United Parent Project Muscular Dystrophy (UPPMD) and represents the Duchenne community at major conferences and in meetings with the FDA, EMA, MHRA, and NICE, and was a member of the MHRA Patient Group Consultative Forum.
Alex was awarded an OBE in 2023 for her services to people with Duchenne.
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Jo Howie – Managing Director
Jo Howie is our Managing Director and is responsible for all operations at the Duchenne UK. She joined the Duchenne UK in September 2019 having spent the previous six years leading the fundraising and marketing team at Lawrence Dallaglio’s charity, Dallaglio RugbyWorks.
Katie Combes – Director of Policy and Communications
Katie Combes is Duchenne UK’s Director of Policy and Communications. Katie is an external affairs leader with more than 12 years’ experience as political and communications consultant. Katie’s son, Finley, lives with Duchenne muscular dystrophy and she is passionate about creating real change for people living with Duchenne and their families. She became involved with Duchenne UK after advising the charity’s co-founders on a campaign to secure early access to a new treatment for patients living with Duchenne. She now leads on all policy and advocacy matters for Duchenne UK and assists in the planning and delivery of campaigns and communications activity for the organisation.
Katie also serves as a member of the Association of British Pharmaceutical Industry (ABPI) Patient Organisation Steering Committee helping to shape the work of the ABPI’s Patient Organisation Forum for registered patient/health charities, which provides opportunities for patient groups to come together alongside pharmaceutical companies to network and learn.
Before joining Duchenne UK, Katie was Director of Communications for an influential London transport trade association helping to raise the profile of the organisation and its members, as well as working closely with civil servants, local and national government on key regulatory issues and other policy challenges facing the sector.
Prior to that, Katie worked in public affairs and communications consultancy roles, supporting clients across the health and social care, pharmaceutical, finance, transport and education sectors to influence policy and delivering integrated public affairs and PR campaigns affecting policy change on a broad range of issues.
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Navjyot Johal – Director of Finance
Navjyot joined Duchenne UK in 2018. As Director of Finance, she is responsible for providing strategic financial leadership, expert advice, and guidance on all financial matters across the charity.
Navjyot has extensive experience in finance and governance, gained through her work as a Finance Director across charitable, not-for-profit, and social enterprises.
Mike Bond – Director of Research and Development
Mike joined as Director of Research and Development in October 2025. He previously worked at LifeArc for 11 years in a variety of roles that encompassed research commercialisation, drug discovery and development, healthtech, medtech, venture capital and grant giving.
For the last two years, Mike led LifeArc’s Insights group, a team of expert PhD-trained analysts responsible for project due diligence and strategic landscaping across the whole organisation.
Mike has an academic background in cell biology and pharmacology and has a career-long interest in rare disease research, having completed his postdoctoral training in rare inherited neurodegenerative disease at University College London, and worked on rare disease initiatives throughout his time at LifeArc.
Theresa Preston – Director of Income Generation
Theresa Preston is a fundraising consultant specialising in growth, appeals, philanthropy and change management, with a track record of leading transformation across national and international charities. She has held senior and board-facing roles across the sector (Teenage Cancer Trust, WaterAid, Autistica and Mencap) and most recently served as a founding Chief Executive, building a new charity from the ground up — establishing its brand, governance, fundraising strategy and a major Heritage Lottery bid.
Over her career she has delivered substantial income growth across regional fundraising models, directed multi-million-pound capital appeals, secured significant strategic partnerships, and shaped long-term philanthropy strategies built for sustainable growth. Beyond the numbers, Theresa is known for coaching boards and ambassadors, upskilling teams and embedding an impact-led culture — leading with integrity to ensure every stakeholder, internal and external, is motivated to thrive.
Hayley Philippault – Head of Technology
Hayley joined Duchenne UK in September 2022 and leads the charity’s technology strategy and development. With a background in product design engineering, she specialises in inclusive design and healthcare products. As Head of Technology, Hayley oversees all assistive technology development programmes, driving innovation to improve the lives of people with Duchenne.
Beyond her role at Duchenne UK, Hayley is Chair of the Children’s Equipment Section of the British Healthcare Trades Association and serves on the Muscular Dystrophy Ireland Research Committee, contributing her expertise to advance accessibility and patient-focused solutions across the sector.
Una Farrell – Head of Communications
Una joined Duchenne UK in 2023 and is responsible for managing the charity’s communications.
She previously worked at The Migraine Trust as Head of Communications and has held communications roles in a range of charities, including Victim Support, Turn2Us, and the League Against Cruel Sports.
David Buckley – Technology Project Manager
David Buckley joined Duchenne UK in October 2023 as Technology Project Manager. With a background in engineering and design, he has held roles in product design, product management, and management of sales and marketing teams.
David brings over 10 years of experience in the disability market and as Technology Project Manager is also actively involved in the design and commercialisation of our assistive technologies.
Maria Sahin – Finance Manager
Maria joined Duchenne UK in 2022 and oversees the management of daily financial operations. Working closely with the Finance Director, the role involves advising on process improvements, preparing for the annual audit, production of timely management reports and deputising for the Finance Director when required.
Maria is also responsible for smooth running of processes across IT, our customer relationship management system and human resources.
Bethan Williams – Strategic Partnerships Lead: Major Grants
Bethan joined Duchenne UK in April 2026 and is responsiblefor raising income from Trusts, Foundations and Institutions.
For the past twenty years, Bethan has worked in fundraising and programming within women’s, children’s and disability rights sectors. Most recently Bethan worked at Womankind Worldwide focussing on Major Grants fundraising, fundraising capacity strengthening of partner organisations and on advocacy for trust-based and flexible giving in global philanthropy.
George Robbins – Social Media and Marketing Officer
George joined Duchenne UK in April 2026 as the Social Media and Marketing Officer. His role involves supporting the comms team as well as creating engaging digital content for Duchenne and helping to manage the social media channels.
In his most recent role, George worked as a Communications Officer for the Campaign for Real Ale (CAMRA), managing communications campaigns and helping to promote the organisation’s work to a wider audience. He has a degree in Sports Journalism, studying at the University of Bedfordshire. and has experience working in a busy press environment.
Dala Jenkin – Personal Assistant to Founders and Director of Research and Development
Dala joined the charity in May 2018 and is the personal assistant to Duchenne UK's founders Alex Johnson and Emily Reuben, as well as Duchenne UK's Director of Research and Development, Mike Bond.
Dala has also worked as Fundraising Manager at Duchenne UK and was instrumental in helping to raise £500,000 in 2020 from the Duchenne Dash AT HOME. Dala previously worked in luxury concierge and the fashion industry and has experience of working in schools with children who have special educational needs and disabilities
Hebe Tily – Finance and Operations Assistant
Hebe joined Duchenne UK in 2024. Beginning her career at Duchenne UK, her role in the office ensures streamlined administrative operations while also managing day-to-day financial tasks. She provides support to management and the wider team.
Our Trustees
Our trustees govern Duchenne UK and oversee how the charity is managed and run.
Cecilia is a purpose-driven entrepreneur and social impact leader on a mission to show how business can be a force for good. She is the founder of From Babies with Love / Uplifting People, a social enterprise transforming the role of HR in driving positive change and donating 100% of its profits to vulnerable children - over $1 million raised so far, uplifting their futures.
By reimagining how companies support their people, Cecilia helps global brands connect people strategies with purpose. With a background in finance and international development, she blends corporate expertise with a deep commitment to equity and sustainability. Winner of the Prime Minister’s Point of Light Award, her pioneering work puts social and environmental impact at the heart of the employee experience - from hire to retire.
Leading a growing movement that proves HR is a powerful force for systemic change, Cecilia is also the host of the 5-star podcast and event series How HR Leaders Change the World, and a sought-after speaker on purpose-led business, ESG, and the power of HR. She has served as a trustee for Duchenne UK since 2012, championing research, care, and support for children and families affected by this rare genetic condition.
When she’s not supercharging HR or championing social impact, Cecilia enjoys life with her husband and two sons amid the usual family chaos.
Chris joined the Board of Trustees in 2019.
Chris enjoyed over 30 years in the advertising business, having started working life as a Unilever marketing trainee. Seven years at Saatchi & Saatchi during the 1980’s and then 18 years at Bartle Bogle Hegarty, the leading creative agency of the 1990’s and 2000’s. In that time Chris worked stints in New York and was CEO of BBH Asia Pacific based in Singapore, establishing new offices in Tokyo and Shanghai.
More recently Chris set up and established the London offices of Cheil, the leading Korean advertising agency, and then was Chairman and CEO of executive search consultants Grace Blue in Europe.
Chris joined to bring communications development and management skills to the organisation. His focus at Duchenne UK was initially setting up the marketing and communications structure. He was then involved in the brand development and culture management.
Claire was appointed Sky’s Group General Counsel in 2025. Claire has been with Sky for 20 years, with previous roles including Deputy Group General Counsel and General Counsel Sky UK & Ireland and Director of Legal, Content & Commercial. Claire has deep experience of the commercial, legal and regulatory environment in which Sky operates and has played a leading role in high-profile merger consultations, regulatory interventions, key content, distribution and streaming partnerships, sports rights auctions and ground-breaking litigation protecting Sky’s brand.
Harriet Moynihan is Head of Accountability in International Law at the Oxford Institute of Technology and Justice at the Blavatnik School of Government, University of Oxford. Harriet is also an Associate Fellow in the International Law Programme at Chatham House (of which she was formerly Director) and a Research Affiliate at the Oxford AI Governance Initiative of the Oxford Martin School, University of Oxford.
Harriet has over 20 years of experience as an international lawyer, including as a legal adviser in the Foreign, Commonwealth & Development Office, as an academic, and in private practice at the law firm Clifford Chance LLP. Harriet has a Masters degree in International Human Rights Law from the University of Oxford (with Distinction) and a Masters in Classics from the University of Cambridge.
James is COO of OutSee, an AI genetic drug discovery start-up. He started his career in consulting at McKinsey and Credo, then moved to Cancer Research UK. He was a founding partner at Syncona, the life sciences investment fund, then moved to be the Managing Director of the Main Programme at Genomics England. Sincethen he founded and led Human Centric Drug Discovery, co-founded Univ8 Genomics, and advises companies, governments and start-ups on data science commercialisation.
Jessamy brings a wealth of experience in healthcare and the Life Sciences industry, with her most recent role as General Manager and Country Lead for Sanofi UK & Ireland. In this role, she led efforts to drive scientific advancements and improve patient outcomes, shaping the future of healthcare.
Jessamy has been actively involved in the Life Sciences sector as a Board Director for the Association of the British Pharmaceutical Industry (ABPI), where she was appointed as Vice-President in 2023, and also as Chair of the European Medicines Group (EMG).
Jessamy’s leadership and contributions to the industry were recognised in 2024 when she was awarded an MBE for services to healthcare innovation. Jessamy began her career in healthcare research/health economics following her BSc. (Hons) in Health Sciences/Health Economics from University of Aberdeen and since then has worked in roles that span the pharmaceutical industry, academia and the NHS. Passionate about bringing benefit to the people and patients we serve, Jessamy has held Non-Executive Board level roles in the NHS for over 10 years across a variety of NHS organisations; Mental Health, Community Care and Learning Disability NHS Trusts as well as those involved in commissioning services for people in primary and secondary care across Hampshire.
Jessamy is a Board Trustee for Everystory, a charity supporting people with Learning Disablities and/or Autism and Duchenne UK, a national charity working to find a solution to Duchenne Muscular Dystrophy.
Krishnan Guru-Murthy is the Chair of the Duchenne UK board. He is one of the main anchors of Channel 4 News.
His TV career began at 18 – and he has presented, reported and produced a number of programmes from Newsround to Newsnight.
In 2013, Krishnan arranged for a small group of friends to cycle from London to Paris on the first ever Duchenne Dash. It has grown to become Duchenne UK’s biggest and most challenging event of the year!
Nick set up the Duchenne Children’s Trust in 2012 with his wife Emily Reuben, after their son Eli was diagnosed with Duchenne. Nick is a partner in a restaurant, film and property businesses.
Peter is the Founder and Executive Chairman of British men’s clothing brand Aubin. Prior to that, he was Founder and CEO of Jack Wills.
Rachel enjoys working at the intersection of Technology, Data and Law, helping organisations bring innovative services and products to market. She has been a lawyer for over 25 years and was a Managing Director and an Executive Committee Member at Accenture. She has had various leadership roles, including as Global Legal Lead of the Strategy & Consulting business and as Chief Counsel to Accenture's Cyber Security business.
Our Patrons
Our patrons are prominent figures who help to raise awareness and support for Duchenne UK.
Her Majesty The Queen, formerly Her Royal Highness The Duchess of Cornwall, became President of Duchenne UK in 2014, and over the past ten years has played a vital role in the growth, development and impact of the charity.
She has hosted a number of events for Duchenne UK, most recently a reception at Clarence House in February 2023, and publicly celebrated our Director of Research and Development, Dr Alessandra Gaeta, on International Women’s Day in 2023 for her leadership of our Elevex arm assist project.
Peter Williams is the Founder & CEO of UK clothing brand Jack Wills, a global brand trading from c.100 company owned stores in Europe, North America and Asia, with franchises across the Middle East. Peter is also a major support of Malaria No More UK.
Laura Williams is a jewellery designer.
Clare Runacres’ voice is known to millions of BBC Radio 2 and BBC 6 Music listeners, where she reads the news. She is a journalist who has worked in broadcasting for more than 20 years covering stories from the Iraq war to the London Olympics, and has even read the Shipping Forecast on Radio 4. She provides voluntary support for the Duchenne UK communications team. Clare has been a committed member of the Duchenne Dash support staff for many years. In 2017 she took part in the ride and wrote a blog about her experiences.
Alex Bilmes is the Editor of British Esquire.
Formerly Features Director of British GQ and Contributing Editor to British Vogue, Bilmes is an award-winning journalist and has written for numerous magazines and newspapers including The Spectator, The Observer, The Times, The Sunday Times and The Daily Telegraph.
Mary Nightingale is one of the main anchors of the ITN Evening news. Her career began in business journalism and she has also presented Wish You Were Here and many other popular programmes.
Having worked at Goldman Sachs and UBS Ben Levine then co-founded LMR Partners in 2009, a London based boutique asset management business. Ben graduated from Cambridge in Economics in 1996 and went on complete his MSc in Econometrics and Mathematical Economics at the LSE.
He lives in London with his wife Miranda and three young children.
Sara Parker Bowles is a fashion writer. She previously worked at Vogue and is now Associate Editor at Harper’s Bazaar.
Sarah Alexander is an actress, known for her roles in British comedy series such as Armstrong and Miller, Smack the Pony, Coupling, The Worst Week of My Life, Jonathan Creek, Me & Mrs Jones and Green Wing.
Peter Serafinowicz is an actor, comedian, writer, composer, voice artist, and director. He has appeared in film (Phantom Menace), on television (Spaced, Peter Serafinowicz Show) and on the radio since the early 90’s. His first book, A Billion Jokes (Volume One) was published in 2012.
Kris Radlinski is a former Wigan and Great Britain rugby league star and current Rugby General Manager.
“Some people wander through life searching for answers as to where they fit into it and what’s it all about. Andy and Alex’s life has been simplified in some ways, as their path has been made very clear. They need to make Jack’s and James’s life happy and create memories. It’s our job to ensure they have the opportunity to do this by helping them in whatever way we can. So I urge you to join me in working with Duchenne UK.”
Andy Farrell is the former Wigan and Great Britain captain, England rugby union coach and current head coach of the Ireland national rugby union team.
“I feel honoured to be an Ambassador for Duchenne UK; a charity set up to help raise much-needed awareness of the fatal disease Duchenne muscular dystrophy. When Andy Johnson (of Joining Jack) asked me to help the first thing that came to mind was my own two sons, as this mainly affects boys, and if anything was ever to happen to them I would hope and pray that I would also get support from friends. AJ has been a great friend since we started to play rugby together and to help him with this charity is a great privilege.”
Jonathan Whitworth, Managing Director of DSales (UK) Ltd, is a passionate supporter of Joining Jack and Duchenne UK, having made the cause his company’s corporate charity and has personally taken part in a number of Joining Jack events.
“Having become aware of Joining Jack after meeting Andy at a charity fundraiser, I could not imagine a more worthy cause for our company to support. Jack’s plight and that of other boys with this crippling condition, could not fail to move the hardest of hearts. As a family man myself with young children, two of whom are type one diabetic, I can fully sympathise with Jack’s parents and their efforts to find a cure. I have got to know Andy and Alex very well over the last few years and don’t know anyone who works as hard for a cause as they do. I hope as many people as possible can help raise awareness and help end the terrible suffering that DMD causes.”
Owen is an English professional rugby union player who plays as a fly-half for Premiership Rugby club Saracens. He was the England captain from 2018 to 2023. He has been part of helping promote awareness of DMD since the start of Jack Johnson’s diagnosis.
“My dad and Jack’s dad played together at Wigan and our families are very close,” says Owen. “The charity has been a huge part of our family’s lives. Everyone who donates or who tells their friends and they then go on to spread awareness or raise money, then they are helping. If I can help spread awareness by doing the salute when I kick a goal to do this, it’s the least I can do.”