Muscular Dystrophy UK, a company limited by guarantee and a registered charity, is governed by a Board of Trustees.
The Board’s role is to:
- set the charity’s strategic direction
- monitor the delivery of the charity’s objectives
- uphold its values and governance and guide
- advise and support the Chief Executive, who leads the Senior Executive Team towards achieving the charity’s vision and purpose.
The Members of the Board of Trustees also act as Directors of the Company for the purpose of company law. The Board meets at least quarterly, and is led by the Chair, Professor Mike Hanna, who was elected at the charity’s 2016 AGM.
Professor Michael Hanna (Chair)
Professor Mike Hanna joined the board of Trustees in 2013, and is passionate about applying research to find better treatments for patients and families with neuromuscular conditions.
He is a Consultant Neurologist specialising in neuromuscular conditions at the National Hospital Queen Square, Director of the MRC Centre for translational research in neuromuscular conditions and Director of the UCL Institute of Neurology. He leads an active research programme and has published more than 200 peer-reviewed original research papers.
Joseph Gordon (Treasurer)
Joe Gordon is the COO of OVO energy, responsible for all aspects of Operations across OVO, including frontline service and back office operations. Joe also sits as Executive Chair of OVO's Home Services Insurance business. Previously Joe has held senior roles in retail finance including as the CEO of first direct Bank and Customer Service director for HSBC UK.A lifelong customer service professional, Joe has been recognised as a leading industry voice and has attained many industry and pan industry awards for customer experience.
In addition, Joe has held a number of advisory roles across HMRC as an Independent Advisor, and the Institute of Customer Service as Vice President. Joe has a brother with Muscular Dystrophy and as such has had a long affiliation of fundraising for MDUK in a number of running events, before becoming a Trustee to the charity in 2019.
Joe was appointed Chair of the Finance Committee in October 2023.
Ian has four children and his youngest son, Ben, has limb girdle muscular dystrophy. Ben went to university and now has a full-time job working in media for a major UK plc.
Ian’s early career was in human resources and he now runs his own management consultancy business alongside working for Cranfield University. Ian brings his insights from this experience to the charity, and he has the longest continuous service of the Trustees, having joined the Board in 2004.
Brigid has been a member of the MDUK Finance Committee since February 2022, and a Trustee since October 2022. Brigid is an experienced non-executive director and a chartered accountant, and has worked in professional services, banking and as a strategic change management consultant. She is the Audit Chair and non-executive director of Strategic Equity Capital plc and of Troy Income & Growth Trust plc, both listed investment trusts, and an independent member of the Finance Committee of Newnham College, Cambridge.
She was until 30 September 2022 the Audit Chair of the National Physical Laboratory and Chair of CDS Co-operatives, a housing association, and also sat on the Audit Committees of the Imperial War Museum and the Royal Institution of Chartered Surveyors. Her experience of MDUK conditions comes from caring for her husband and two of her adult children who have myotonic dystrophy type DM1. Brigid and her family have fundraised for the charity and helped to raise the profile of muscle wasting conditions.
Charles started his career in corporate finance with Wood Gundy in Toronto. He joined Morgan Stanley in 1985 and left the firm as Chief Operating Officer of Morgan Stanley UK in 2007, after serving as Head of Equity Sales, Europe and Head of Investment Research, Europe. He was a Trustee of the Morgan Stanley International Foundation from 1992-2007, and Chairman from 1993-2000.
Charles serves on a number of Polar Capital Fund Boards, is Chairman of MAN Fund Management UK Limited and is on the Investment Advisory Committee of Brasenose College Oxford. He has been a long-standing supporter of the work of Muscular Dystrophy UK, as well as an active supporter of the Q Trust. Charles sits on MDUK’s Finance and Appointments and Remuneration Committees.
Martin is a career marketing and communications professional. A specialist in the development and direction of strategic programmes embracing brand and reputation management, financial and corporate communications, business development and public relations. He has worked for major international corporations including Barclays Wealth, 3i Group, Orange, Arthur Andersen, Goldman Sachs and S.G.Warburg & Co.
He intends to support and champion the Charity further by enthusiastically and actively providing appropriate encouragement, advice, and guidance drawing on his communications and marketing knowledge, experience and expertise.
Claire O’Hanlon MBE
Claire has extensive experience (since 2007) in Business Development with a key focus on early stage entrepreneurship, business development and organisational change, communications, learning, coaching and mentoring for team, business and personal development.
Claire has a family history of Duchenne muscular dystrophy and her 9-year-old son and 7-year-old cousin live with Duchenne. In 2012, she started a fundraising group, Leap for Luke, which raised £100,000 for various muscular dystrophy charities. Through Leap for Luke she created awareness of Duchenne locally as well as engaging in campaigning.
Claire is Chair of the Northern Ireland Council of MDUK, a Peer Support Volunteer with MDUK and was part of the delegation that travelled to Washington in 2016 in support of FDA approval of Eteplirsen (Exondys 51). She completed the EURORDIS Summer School in June 2018 which aims to equip attendees with the skills & knowledge to advocate for access and changes to the development of drugs for rare diseases.
Gerry became involved with MDUK shortly after the diagnosis of his son with Duchenne muscular Dystrophy. He and his wife appreciated the support of the charity, so they joined as a member, launched the family fund ‘Muscle in with Somhairle’ and Gerry became a member of the MDUK Scottish Council. He brings his lived experience as a parent and ambassador of a child with a muscle wasting condition, and his skills as an accomplished communicator and negotiator from his role as a Scottish Police Officer working through a variety of front line, operational, critical, and specialist policing fields in both management and leadership roles. Gerry has a personal interest in the promotion of the wider quality of life beyond reliance on clinical care; breaking barriers and pushing boundaries in inclusivity and equality.
Chair of the Microscope Ball since 2018, Michelle hosted her first event in 2019, which beat previous fundraising records. She has been incredibly supportive during the pandemic; gaining volunteers to lead a new virtual wellbeing programme and driving the £100k net target from the property industry, despite the cancellation of the 2020 Ball. Michelle’s network also introduced us to the Piccadilly Lights opportunity, which led to further marketing sites and increased media interest in Walk with Carmela fundraising campaign.
Michelle joined Oxygen Asset Management in 2014, taking on responsibility for the overseeing of development projects, liaison with building management and tenant engagement. Her background is in the management and delivery of the development, refurbishment and management of buildings. She has significant experience in central London buildings. An active member of the British Council of Offices, Michelle sits on the BCO Committee for the Mentoring of new talent in the property industry.
Scott is a Partner in the Real Estate Commercial team, at JMW Solicitors LLP, with over 15 years’ experience transacting in the commercial property sector in the UK and Australia. He has been an active member of the Microscope Ball committee for 4 years, securing tables and auction prizes. His pro bono support and advice has also been invaluable during the pandemic in terms of MDUKs legal position regarding contracts for cancelled events due to Covid, saving the charity thousands of pounds in the process. He also sought assistance from a colleague in his firm for the Blackbaud data breach at a reduced fee.
Professor Deirdre Kelly CBE
Professor Deirdre Kelly, a graduate of Trinity College, Dublin, is Professor of Paediatric Hepatology at the University of Birmingham, Consultant Paediatric Hepatologist and Founding Director of the Liver Unit for Birmingham Women’s & Children's Hospital NHS Foundation Trust. She has trained in both adult and paediatric gastroenterology and hepatology.
Professor Kelly set up the Paediatric Liver Unit at Birmingham Women’s & Children's Hospital (BWC) in 1989 which has a track record of academic and clinical innovation. She retired from routine clinical care in 2021, but continues her academic research.
She has significant NED/Board Experience as a member including GMC, 2013-2020. She is currently a NED at Guys and St Thomas NHS Foundation Trust and Chair of Evelina London. She set up a small charity to support children with liver disease and has been a Trustee on a number of national Charities, including Breast Cancer UK. She has been President of many professional societies including the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) (2006-2010).
Professor Kelly was made a CBE (Commander of the British Empire) by her Majesty the Queen in 2016 and received the ESPGHAN Distinguished Service award in 2016 and the EASL Recognition Award in 2019.
She is married with two children, one of whom has FSHD and four grandchildren.
John Sharkey has spent most of his commercial life in communications businesses. He was joint managing director of Saatchi and Saatchi UK, founded and ran his own advertising agency and was chair of various other communications and recruitment enterprises. He became strategic communications advisor to Nick Clegg in 2007 and was chair of the Liberal Democrat’s General Election campaign in 2010 and of the 2011 Fairer Votes campaign.
He is a former Chair of the Hansard Society, a former Governor of the Institute for Government, a founding director of the financial services think-tank New City Agenda Ltd and a former director of the not-for-profit fact checking organisation, Full Fact Ltd. He is also a member of Council at UCL and chair of its Remuneration Committee.
He chairs the Specialised Healthcare Alliance, is the former chair of the Association of Medical Research Charities. He is a member of the House of Lords and of its EU Select Committee on Industry and Regulators. Lord Sharkey sits on the MDUK Appointments and Remuneration Committee.
James was diagnosed with SMA type 3 as a small child. He is the Head of the Bridge Programme at the City Bridge Trust and a former Chair of the Grants Committee at the BBC Children in Need. He also sits on the Disability Advisory Group working with Transport for London and is a member of the London Recovery Board for the Greater London Authority.
James previously served as a volunteer before employment with the Trailblazers team at MDUK – spanning seven years across volunteering and employment. Currently a panel member for Joseph Patrick Trust, James became a member of the MDUK judging panel for the 2022 President’s Awards.
James is an experienced campaigner. He has worked at local and national levels on policy design, management of grants and has extensive experience in the world of Trusts & Foundations. He has lived experience combined with professional expertise in matters of equity, diversity, and inclusion.
James is an active member of disabled communities with MD and across a wider disability spectrum. Professionally, he has worked to advance the rights of disabled people to participate politically, access employment and achieve greater equity.
The Joseph Patrick Trust
The Joseph Patrick Trust (JPT) is the welfare fund of Muscular Dystrophy UK. Find out more about the JPT.
Joseph Patrick Trust Grants Panel
Robert Warner (Chair) Karen Duckmanton Jane Field Jane Freebody James Lee Patricia Lock Julian Pritchard Kirsty Read
About our committees
Muscular Dystrophy UK has the following committees:
Joseph Patrick Trust Management Committee
Julian Pritchard (Chair), Ian Gordon, Robert Warner
Ian Gordon (Chair), Marcus Brown, Helene Crutzen, Ian Mathieson, Charles Scott, Joseph Gordon
Appointments and Remuneration Committee
Professor Mike Hanna (Chair), Ian Gordon, Charles Scott, Baroness Celia Thomas of Winchester MBE
Medical Research Committee
Dr Gillian Butler-Browne PhD (Chair), Professor Tracey Willis PhD (Vice Chair), Professor Grainne Gorman MRCP, PhD Professor Ketan Patel PhD, Professor Frédéric Relaix PhD, Dr Stefan Winblad PhD, Professor Laurent Servais PhD, Dr Heidi Fuller PhD, Professor Linda Popplewell PhD, Dr Meredith James PhD
Lay Research Panel
Peter Ashley (Chair), Alison Kay (Vice Chair), Richard Davenport, Corinthia Joseph, Andy Rose, Graham Gornall, Victoria Houghton, David Towler, Alexa Gummow, Hannah Langford, Amber Tirimanna, William Love, Modupe Joshua, Tammerin du Preeze
Roli Roberts (Scientific advisor)
Services Development Committee
Professor Deirdre Kelly (Chair), Baroness Celia Thomas of Winchester MBE, Dr Chiara Marini-Bettolo, Phillippa Farrant, Sheila Hawkins, Sue Manning, Professor Francesco Muntoni, Dr Ros Quinlivan, Carolyn Young, Tanvi Vyas
Dr Sheonad Macfarlane BSc Med Sci, MB ChB (Chair), Lindsey Armstrong, David Gale, Catherine Gillies, Allyson Townhill, Jodie Murphy, Linda Harley, Jon Watkins, Fiona Neale, Gerry McMenemy, Elizabeth Alexander.