TrusteesTrustees n.sutherland@m… Mon, 06/14/2021 - 15:39
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 and has served on the charity’s Finance Committee and the Appeal Board since 2012.
Marcus has had a 30 year career in investment banking and has served as a Managing Director at a number of global financial services firms and lived and worked in Hong Kong, New York and London.
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.
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.
Robbie 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. Robbie’s son, Eoghan, who had Duchenne muscular dystrophy passed away aged 27 in 2021; was an active member of his local community and at MDUK
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 Gordon is the COO of OVO energy. Having joined the business in May 2021 as VP of Customer Care before taking on the COO role in March 2022. In this role Joe is responsible for all aspects of Operations across OVO, including frontline service and back office operations.
Prior to joining OVO Joe held senior roles in retail finance including as the CEO of first direct Bank for three years, attaining the number one spot for customer experience during his tenure. Before this Joe was Customer Service director for HSBC UK, and prior to that held a number of other customer experience and service roles across such companies as BT and Sainsburys.
Joe is passionate about customer experience and 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.
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, 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.
Lawyer. 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.
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.
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. She retired from routine clinical care in 2021. She set up the BWC Ethics Committee in 2000 and continues to be a member.
She has significant NED/Board Experience as a member including GMC, 2013-2020. 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 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.
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 Patrick Chinnery, FRCP FMedSci PhD (Chair)
Dr Gillian Butler-Browne PhD (Vice Chair)
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
Dr Stefan Winblad PhD
Professor Tracey Willis PhD
Professor Laurent Servais PhD
Dr Heidi Fuller PhD
Professor Linda Popplewell 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.
Martin Cardoe (Chair)
Northern Ireland Council
Claire O’Hanlon (Chair)
Clare Boylan (Secretary)
Graham Cloke (Treasurer)
Dr Sheonad Macfarlane BSc Med Sci, MB ChB (Chair)
AboutAbout n.sutherland@m… Mon, 06/14/2021 - 15:41
This is a voluntary role, but one that is challenging and central to the working of the charity. It is similar to being a director of a commercial company. You can also help us through your skills and experience by serving as a member of one of the Board committees. Many Trustees have said they found it a very good introduction to the charity to spend some time as a committee member before stepping up to the full Board.
The role of the Trustee
Muscular Dystrophy UK is governed by a Board of Trustees who come from a variety of backgrounds. They are united by their wish to create positive change for those living with muscle-wasting conditions. The Board currently has 13 members.
The Trustees have the ultimate responsibility for the long-term wellbeing of the charity and act as guardians of its assets. They must ensure that the organisation has a clear strategic direction, is properly managed and operates to high standards of governance.
The Board meets at least four times each year at Muscular Dystrophy UK’s head offices in London. Trustees also participate in informal events and serve on committees involved in specific areas of our work. As already noted, many trustees have found it helpful to serve on a committee (covering important areas such as Finance and Appeals) before joining the Board. The time commitment varies according to each Trustee’s circumstances and could be as little as two days each quarter, or one day a month. Trustees are unremunerated, though travel and associated expenses are reimbursed.
The job of the Trustee is a demanding and wide-ranging one. It requires good judgment, a commitment to the charity’s mission and an ability to work as part of a team with diverse skills and backgrounds. A sensitivity to the issues around the different roles of executives and non-executives is also important.
Becoming a Trustee is a significant responsibility and requires energy and commitment but it is also personally rewarding and a crucial element in the structure and success of the charity.
The work of a Trustee offers you an opportunity to use your skills and experience to support and guide our work. For some people, becoming a Trustee can also help in learning new skills.
How to apply
To become a Trustee, you must be a Charity Member (or prepared to become a Charity Member) of the charity and be either:
- nominated by the Board
- nominated in writing by regional or national groupings of the charity on the invitation of the Board
- nominated in writing by five Charity Members (no later than 28 days before the annual general meeting [AGM]).
Nominees are voted into office by the Charity Members at the charity’s AGM.
If you are interested in serving on a Committee or becoming a Trustee, please get in touch with Matt Biltcliffe at our London office.
Muscular Dystrophy UK
61A Great Suffolk Street