Our Trustees

About our Trustees

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. He follows Bill Ronald, who has stepped down after making a major contribution during his six successful years as Chair.

Find out more about becoming a Trustee.

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 Gordon

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.

Mr Andrew Graham

Andrew has a great deal of business and financial expertise and joined the Board in September 2010. He is Chief Operating Officer of the BVCA (British Venture Capital Association).

Before joining the BVCA in 2008, he worked at Bank of America as EMEA Business Manager for two years. Prior to that, he was COO for ABN AMRO’s wholesale division. He has also been European CFO for the Bankers Trust and held senior roles at Deutsche Bank.

Sheila Hawkins

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.

Louisa Hill

Louisa’s younger son Archie was diagnosed with Duchenne muscular dystrophy in 2009. At the time, the family was told there was nothing they could do. Louisa feels that joining the Board will be one way of changing that; she believes that as a parent, she can make a difference. She is passionate about helping other families with Duchenne muscular dystrophy, and indeed other muscle-wasting conditions. Her main aim is to help families that have just been given their child’s diagnosis.

A NNEB Qualified Nursery Nurse with three years’ Montessori Teaching, Louisa has been heavily involved with the successful campaign for access to Translarna. This has included meetings with MPs, NICE, NHS England and PTC Therapeutics. Louisa is a strong supporter of the charity, experienced in dealing with the media, and a very successful fundraiser.

Dr Amy Jane (AJ) McKnight

AJ is the third generation of her family to be involved with Muscular Dystrophy UK. Her grandfather was a founding member in Northern Ireland and her father was a previous Chair. Several members of her family live with neuromuscular conditions, and she has a range of experience around complex needs.

A geneticist by profession, AJ is keen to contribute her experience and skills to increasing awareness of muscle-wasting conditions and to drive forward change to help families. She is a past Chair of the Northern Ireland Council and a member of the Northern Ireland rare disease stakeholder group.

Richard Price

Richard brings extensive commercial expertise after nearly 40 years practising as a solicitor with CMS Cameron McKenna, a large law firm based in the City of London. Richard was the senior partner of the Firm for nine years prior to his recent retirement.

Richard joined the Board in 2015. He intends to use his extensive commercial experience and professional skills to assist the charity in meeting its strategic goals in the fight to beat muscle-wasting conditions.

Charles Scott

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 Vyas

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.

The Joseph Patrick Trust

The Joseph Patrick Trust (JPT) is the welfare fund of Muscular Dystrophy UK. Find out more about the JPT and meet the Grants Panel.

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

J Alexander Patrick CBE DL (Chair)
Julian Pritchard
Ian Gordon
Robert Warner

 

Finance Committee

Marcus Brown (Chair)
Ian Gordon
Andrew Graham
Ian Mathieson
Charles Scott
Caroline Williams.

Appointments and Remuneration Committee

Professor Mike Hanna (Chair)
Ian Gordon
Richard Price
Baroness Celia Thomas of Winchester MBE.

Medical Research Committee

Professor Charles ffrench-Constant PhD FRCP (Chair)
Professor Thomas Braun Dr med Dr rer. nat.
Professor Olivier Pourquie PhD
Professor Marco Sandri MD
Professor Stephen Sawcer MBChB PhD
Professor Baziel van Engelen MA MD PhD
Dr Anna Mayhew PhD
Dr Jasper Morrow MBChB, PhD, FRACP
Professor Thomas Gillingwater MBA PhD
Professor Ulrike Schara MD PhD
Professor Dominic Wells MA VetMB PhD MRCVS FHEA FS (Deputy Chair)

Professor Benedikt Schoser MD

Lay Research Committee

Alex Williamson (Chair)
Naima Ali-Khan
Peter Ashley
Richard Davenport (Vice Chair)
Corinthia Joseph
Stephen Meech
Roger Porcherot
Hilary Rattue
Roli Roberts (Scientific advisor)
Andy Rose
Helen Stockdale
Manoj Thakrar
Trevor Thomas
Natalie Woodcock.

Services Development Committee

Baroness Celia Thomas of Winchester MBE (Chair)
Professor Kate Bushby (Institute of Human Genetics)
Phillippa Farrant (Parent of son with Duchenne muscular dystrophy)
Sheila Hawkins (Trustee, NHS)
Professor Deirdre Kelly (Professor of Paediatric Hepatology)
Sue Manning (Neuromuscular Care Advisor)
Professor Francesco Muntoni (UCL Institute of Child Health)
Dr Ros Quinlivan (MRC Centre for Neuromuscular Diseases)
Carolyn Young (NHS England)
Dr Aleks Radunovic PhD FRCP
Tanvi Vyas.

Appeal Board

The Appeal Board is a group of Senior Volunteers who meet quarterly to help raise funds and awareness through their extended networks.

Martin Cardoe

Alex Elberg

Karen Lewis-Attenborough

Tim Lumsdon

Jeremy Pelczer (Chair)

Charles Scott

Northern Ireland Council

Amy Jayne McKnight (Chair)
Marie Hollywood (Vice Chair)
Graham Cloke (Treasurer)
Clare Boylan (Secretary)
Claire O’Hanlon
Dave McLean
Jim McKeogh
Conor O’Kane
Michael Hollywood
Jackie McFetridge
Mairead Scott
Leona Connolly
Art Connolly
Phillip Ellis
Hayley Ellis
Anne Hughes
Niamh Mullan
Kerry McStravog
Catherine Taggart
Cormac McAteer
Lucy Hare
Suzanne Glover.

Scottish Council

Dr Sheonad Macfarlane BSc Med Sci, MB ChB (Chair)
Connor Colhoun
David Davidson
Catherine Gillies
Craig Hamilton
Diane Johnstone
Eleanor McCaffer (Secretary)
Scott McIntyre
Gill Mitan
Brian Tolmie (Treasurer)
Robert Warner.

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