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.
Marcus Brown (Treasurer)
Marcus was appointed Chair of the charity’s Finance Committee in September 2016. He has served on the charity’s Finance Committee and the Appeal Board since 2012.
Marcus is a Managing Director of the financial services firm, VTB Capital, having moved there in 2011 from RBS. Before that, he had worked for more than 20 years for UBS, with time in both their Hong Kong and New York offices. He has served on the charity’s Finance Committee and the Fundraising and Development board since 2012.
Marcus was diagnosed with Charcot-Marie-Tooth disease (CMT) in his early 20s, and wholeheartedly followed his consultant’s advice to ‘get on with his life’. While he brings a broad understanding of financing, investment, detailed analysis and facilitation of growth in business to his role as Trustee, he is also keen to use his personal experience to support people affected by muscle-wasting and related neuromuscular conditions to get on with their lives.
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.
Sheila has worked in third sector organisations both in service delivery and managing national projects. She has experience of vocational education/training and workforce planning in the NHS and is also a Trustee of various small charities.
Sheila herself has facioscapulohumeral muscular dystrophy (FSHD), having been diagnosed more than 20 years ago. She was Chair of the FSH Support Group from 2004 to 2009, creating committees and developing a service level agreement with the then Muscular Dystrophy Campaign.
She was also a member of the Care and Research Committee from 2005 to 2010, and is currently a member of the East Midlands Muscle Group. Her wish is to contribute to the strategic direction of the charity and to represent the experiences of adults with muscle-wasting conditions.
Charles started his career in corporate finance with Wood Gundy in Toronto. He joined Morgan Stanley in US equity sales in 1985, and left the firm as Chief Operating Officer of Morgan Stanley UK in 2007. He served as a Trustee of the Morgan Stanley International Foundation from 1992-2007, and as Chairman from 1993-2000.
In addition to his role with Vantage Investment Advisory, Charles serves on a number of Polar Capital Fund Boards, and is a Managing Director of Imprimatur Capital Limited. He has been a long-standing supporter of the work of Muscular Dystrophy UK, as well as an active supporter of the Q Trust and the charity’s annual Sports Quiz.
Baroness Celia Thomas MBE
Celia was made a Life Peer in 2006 and she has been a driving force behind the work of the All Party Parliamentary Group for Muscular Dystrophy, of which she is now a very active Vice Chair. She has also addressed issues such as welfare reform and disability rights in Parliament.
Celia chairs the charity’s Services Development Committee, where she brings together representatives from NHS England, NHS Commissioners, consultants and health and social care professionals, as well as people living with muscle-wasting conditions. She has Pompe disease.
Tanvi joined Board in March 2018 having previously worked for the charity for seven years, starting out as a volunteer Trailblazer in 2009. Tanvi has spinal muscular atrophy (SMA), and has a keen interest in social care, breaking down social perceptions and barriers and mental health. Tanvi works as a disability consultant, and is a current member of DPTAC at the Department of Transport. While studying for her undergraduate Law degree, she worked at Aspire – an inclusive leisure centre – and also for a disability and dyslexia service encouraging young disabled people to attend university.
Tanvi firmly believes MDUK is the leading charity for all individuals with muscle-wasting conditions, and she brings a unique voice to the board from both a professional and personal perspective. She communicates well with different audiences, having spoken in Parliament, at various MDUK events and has featured on local and national television, on radio, online and in print.
Robert (Robbie) Warner
Robbie has been re-elected for a further term as a Trustee. Robbie has recently retired and left his former role as an experienced senior Head of Social Work for a local authority in Scotland. He has a son, Eoghan, who has Duchenne muscular dystrophy, and who is currently at university studying History and Politics.
Robbie also serves as a member of the JPT Panel and has been the Chair of the Scottish Council. With his wife, Elaine, and family, he has undertaken several fundraising challenges to support the work of the charity. Robbie is passionate about the rights of those with muscle-wasting conditions and has had considerable experience in alerting Ministers and MSPs in the Scottish Parliament to shortfalls in services. He is also experienced in presenting issues in the media and is adept at building relationships and working closely with healthcare professionals and our supporters.
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 sits currently on both the MDUK Appeal Board and Sports Quiz committee and 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.
Joe took over as Head of the online and telephone bank first direct in 2017, with the aim of exceeding its ambitious growth targets, and enhancing its reputation for innovation and customer service. At 35 Joe’s one of the youngest bank leaders in the UK and a great fit for the Leeds-based bank, which is one of the most dynamic success stories in banking in the last 30 years.
Prior to first direct, Joe headed up HSBC UK’s contact centre operation, looking after 11 sites and c. 4,500 people. He moved to HSBC from BT in 2015, where he held a variety of roles including ‘Head of Service’ for billing and enquiries, Business improvement consultant, Marketing operations manager and Commercial finance manager.
Joe began his career at Sainsbury’s on the retail graduate scheme in store, before moving to supply chain operations and then finally as a ‘Planning and Support Manager’ to the CEO of Sainsbury’s Convenience. Throughout his career, Joe has sought out roles that are customer centric and enjoys leading large teams through change and helping people develop themselves and achieve their potential. A keen foodie and gym enthusiast – possibly linked – outside of work Joe is kept very busy with his young family.
Claire O’Hanlon MBE
Claire has over 12 years’ extensive experience 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.
Michael is a member of the Royal Institution of Chartered Surveyors. He has been at CBRE, a worldwide real estate services provider, for 15 years, promoted in 2018 to Senior Director where he is responsible for managing contracts and relationships with leading Corporate clients.
Michael is keen to bring his leadership and management experience leading teams, complex relationships and projects to supporting the future strategy and direction for the charity.
Michael is a member of the Scottish Council of MDUK, alongside his wife.
Michael’s 8 year old daughter, Georgie has LMNA CMD. The family have an active Family Fund, “Georgie’s Genes” with approximately £70,000 raised to date. Michael recently took on a 35-mile ultramarathon challenge around the island of Tiree, finishing sixth out of over 200 participants and raising over £8k for the Georgie’s Genes family fund.
Chair of the Microscope Ball since 2018, she hosted her first event in 2019, which beat previous 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. Her network also introduced the Piccadilly lights opportunity which led to further marketing sites and increased media interest in Carmela’s story and campaigns.
Michelle joined Oxygen Asset Management in 2014, where her role involves supporting the Directors with the co-ordination and implementation of Development Projects. Previously at Cube Management LLP a London based Project Management and Cost Consultancy, she worked with lead clients such as; Blackstone, Catalyst Capital, Hilton Hotel Group. Pinewood Studios, RBS, Tesco, Curzon Cinemas and Sainsbury’s.
Lawyer. Has been an active member of the Microscope Ball committee for 4 years and recently led the pro bono case against the Hilton Hotel to stop MDUK paying £100k for the cancelled event in 2020. He also sought assistance from a colleague in his firm for the Blackbaud data breech at a reduced fee.
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.
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)
About our committees
Muscular Dystrophy UK has the following committees:
Joseph Patrick Trust Management Committee
Julian Pritchard (Chair)
Marcus Brown (Chair)
Appointments and Remuneration Committee
Professor Mike Hanna (Chair)
Baroness Celia Thomas of Winchester MBE
Medical Research Committee
Professor Hugh Willison MBBS PhD (Chair)
Dr Gillian Butler-Browne PhD
Professor Thomas Gillingwater MBA PhD
Professor Grainne Gorman MRCP, PhD
Dr Anna Mayhew PhD
Dr Jasper Morrow MBChB, PhD, FRACP
Professor Ketan Patel PhD
Professor Olivier Pourquie PhD
Professor Mary Reilly MD, FRCP, FRCPI
Professor Frédéric Relaix PhD
Professor Ulrike Schara MD PhD
Professor Dominic Wells MA VetMB PhD MRCVS FHEA FS (Deputy Chair)
Dr Stefan Winblad PhD
Lay Research Committee
Richard Davenport (Chair)
Peter Ashley (Vice Chair)
Roli Roberts (Scientific advisor)
Services Development Committee
Baroness Celia Thomas of Winchester MBE (Chair)
Dr Chiara Marini-Bettolo
Professor Deirdre Kelly
Professor Francesco Muntoni
Dr Ros Quinlivan
The Appeal Board is a group of Volunteers who meet quarterly to help raise funds and awareness through their extended networks.
Jeremy Pelczer (Chair)
Northern Ireland Council
Claire O’Hanlon (Chair)
Marie Hollywood (Vice Chair)
Clare Boylan (Secretary)
Graham Cloke (Treasurer)
Dr Sheonad Macfarlane BSc Med Sci, MB ChB (Chair)