About Us Meet The Team Our Management Team Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust. The two charities have now joined forces to become Duchenne UK. Emily Crossley Emily is the co-founder and joint CEO of Duchenne UK. Emily set up the Duchenne Children’s Trust in 2012 after her son was diagnosed with Duchenne. Before that she was a reporter and anchor for Channel 4 News and CNN International. The Duchenne Children's Trust raised £3.5million in its first three years, to spend on clinical trials, research, and clinical trial infrastructure. The charity set up the annual Duchenne Dash, which brings in money for research and raises awareness around Duchenne muscular dystrophy. Emily has advocated on behalf of patients around the world. She's spoken many times in the Houses of Parliament. She is a member of the MHRA patient group consultative forum. Alex Johnson Alex is the co-founder and joint CEO of Duchenne UK. Alex founded the charity Joining Jack with her husband, ex-rugby league player Andy Johnson, following their son Jack’s diagnosis with Duchenne muscular dystrophy in 2011. The rugby community came together to help the family and helped them create international awareness for Duchenne with innovative campaigns like #Link4DMD. The charity has successfully raised more than £2 million to spend on translational research and clinical trials. Alex has subsequently joined the board of United Parent Project (UPPMD) and has helped organise international awareness events like World Duchenne Awareness Day. She has represented the Duchenne community by speaking at international conferences around the world, workshops and meetings with the FDA, EMA, MHRA, NICE and at the Houses of Parliament. Alex was honoured to join the steering committee that helped organise a workshop with the EMA on exon skipping. Following the meeting the steering committee published an article in the Lancet. Alex completed training at a Eurordis summer school to become a trained patient advocate and is also a member of the MHRA patient group consultative forum. Fiona Lawrence Fiona is the Director of Research & Clinical Development for Duchenne UK. She is a senior clinical research scientist and joins Duchenne UK from the pharmaceutical industry. She has a wealth of experience in Duchenne muscular dystrophy and clinical trials. She previously worked at Prosensa and then Biomarin on their exon skipping trials for DMD. Before that she worked on clinical trials at Cambridge University Hospitals and at Genzyme, a biotech working with rare diseases. Trustees Andrew Nebel Andrew Nebel is the Chairman of our Board. Andrew spent 12 years as UK Director of Marketing and Communications at Barnados, where he lifted their regular annual fundraising from c.£50million in 1997 to over £78 million in 2007/8. He is also a Non-Executive Director of Moorfields Eye Hospital, among many other posts. Caroline Ayling Caroline is Managing Director of Legend Holidays & Events. Previously she worked at Esportif managing rugby players and Synergy in sponsorship strategy and brand activation. Hannah Becker Hannah is a strategy and business development specialist. She has worked in Advertising, and as a Consultant to Boots, The Prudential, Cadbury's and Roche Pharmaceuticals as well as in house at Tesco. She was the Chairman of trustees at Studio Upstairs, an arts and mental health charity. At Duchenne UK Hannah advises on fundraising strategy and the charity’s internal plans for achieving its ambitions in the coming years. Cecilia Crossley Cecilia is founder and CEO of the social enterprise company, From Babies With Love. Previously she trained as an accountant with KPMG and was Financial Director of the Gaia Foundation. Harriet Moynihan Harriet is an Associate Fellow in the International Law Programme at Chatham House. Previously Harriet worked as a legal adviser at the UK’s Foreign & Commonwealth Office, and in the London and Singapore offices of the law firm Clifford Chance. Nick Crossley Emily & Nick set up the Duchenne Children’s Trust in 2012, after their son Eli was diagnosed with Duchenne. Nick is a partner in restaurant, film and property businesses. Deepak Nambisan Deepak is a barrister practising commercial law from Fountain Court Chambers in London. He studied at Harvard Law School, Oxford University and Cambridge University, was a Fulbright Scholar and is a published author in the field of commercial law. Deepak has extensive experience in the charitable sector and he is also a trustee of a UK educational charity working with underprivileged children in Sub-Saharan Africa. Deepak is married to Lowri Glain Nambisan, an award-winning TV producer with a longstanding involvement in Duchenne fundraising. Maria Hassard Maria is Deputy Director of Research at Moorfields Biomedical and Clinical Research Centre, a globally renown centre for pioneering work on new therapies and treatments for diseases in eyes and vision. Previously she worked in commercial roles for several blue chip life science companies and also ran a small company commercialising intellectual property for healthcare innovations. Donor Advisory Board Our Donor Advisory Board is composed of committed donors, called Founding Patrons. Founding Patrons support us in our fundraising goals through donations, corporate support, connections and advice. The role of the Donor Advisory Board is to help Duchenne UK secure regular income, which gives us the freedom to commit funds on a repeat basis to the most promising projects. With this security, leading scientists and doctors can spend less time chasing funding, and more time in research and drug development. Anthony Gutman Anthony is co-head of Investment Banking Services in EMEA and co-head of UK Investment Banking. He is a member of the Partnership Committee. He joined Goldman Sachs as a managing director in 2007 and was named partner in 2012. Prior to joining the firm, Anthony spent seven years at Citigroup. Earlier in his career, he qualified as a corporate solicitor at Freshfields in London. Anthony earned a BA in Modern History at Worcester College, Oxford University, and a CPE and LPC degree from the London College of Law. Anthony is a member of The Sutton Trust strategic advisory and development board. David Soanes David graduated from Magdalene College, Cambridge University in 1991 and joined the investment bank UBS (SBC). He is UBS Investment Bank's Global Head of Financial Institutions and the UK Country Head for UBS Group as well as being a UBS Limited board member, a member of the British Bankers Association board and of the Association for Financial Markets in Europe board. David is a trustee of the ClementJames Centre in North Kensington and a member of BiTC's Education Leadership Team. Peter Williams Peter is the Founder & CEO of UK clothing brand Jack Wills. Founded in 1999 and grown organically from a single £40k investment, Jack Wills is now a global brand trading from c.100 company owned stores in Europe, North America and Asia, with franchises across the Middle East. As an expert in brand communications, Peter is considered to be at the leading edge of multi-channel retailing, social media and viral marketing. As well as supporting Duchenne UK, Peter is also a major supporter of Malaria No More UK.