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Senior staff

Chief Executive Officer

Ben Merrett

Ben Merrett

Ben had a broad commercial career before joining DEBRA in 2008. This included working at the Burton Group, BT, World-On-Line and Perot Systems. His first CEO role initially involved raising funds to rescue Gladstone plc, an AIM quoted Software Company, and then successfully developing the organisation.

Since joining DEBRA the charity has experienced a financial turn-around. With an acquisition and well implemented gift aid initiative the charity’s retail division has grown from £4m to £8m turnover and quadrupled its net profit. This has restored the continual investment in world-class research that is vital in finding treatments for EB. He is married to Heidi and they have six children. He graduated from Warwick University, was commissioned at Sandhurst and did his MBA at Cranfield. His hobbies include cycling, gardening and kite surfing.

Director of Research

Caroline Collins

Caroline CollinsCaroline has 25 years’ experience in clinical, commercial and scientific fields. Her commercial capability and direct experience of clinical trials is very relevant to DEBRA, and much to the relief of those of us who struggle to understand the complexities of Research, one of her key skills is being able to communicate progress in Research to lay audiences.



Director of Finance

Carol Harris

Carol HarrisFollowing a degree in Business Administration, Carol qualified as a Chartered Management Accountant. Her career has involved positions in both large multi-nationals and SMEs. She has worked for DEBRA since 2009, leading an integrated team covering finance, income processing, gift aid reclaim, facilities, IT and systems development.

She lives in Crowthorne and is married with 3 grown up children. Her interests outside work include ballroom and Latin American dancing, swimming, golf, bridge and travelling.

Director of Healthcare, Membership and EB Community Support

Claire Mather

Claire MatherClaire brings over 18 years’ experience of working both for the NHS as a qualified nurse and Ward Sister and for the third sector as Head of Nursing in a leading hospice. Following a master’s in Business Administration, she took on the role of a Director at DEBRA and is passionate about helping to make a difference, today, for people living with EB.

A significant focus of the role has been to work collaboratively with key stakeholders to provide creative solutions to the challenges faced in the delivery of best practice, and to lead a number of commercial projects partnering with organisations in the private and public sector to both improve the range of goods and services on offer to those living with EB and raise income for the charity. Claire lives in Oxfordshire and has a keen interest in water sports, travel and gardening. 

Director of Human Resources

Louise Westphalen

Louise WestphalenLouise has been with DEBRA since 2006.  Her extensive experience in HR is reflected in her professional status as a Fellow of the Chartered Institute of Personnel & Development.  For the past decade, her career has developed in the charity sector. Combining her sound understanding of employment law and knowledge of good practice, with a genuine interest in people as unique individuals, she aims to ensure that every employee has the ability, opportunity and motivation to reach their potential. 

Louise is married to Flemming and they are starting to enjoy the freedom of having a grown up family.  Mojo, the dog, gets longer walks, and Louise is learning to play the piano again, picking up where she left off as a teenager – just a few years ago!

Director of Fundraising and Communications

Hugh Thompson

Louise Westphalen

Hugh has worked within charity fundraising for 20 years across 6 different organisations, primarily in the hospice sector. He is excited to join DEBRA at this pivotal time with the opening of the Rare Disease Centre at Guys and St Thomas’ Hospital in 2017. 

Focused on increasing engagement with the EB community whilst raising awareness for this terrible condition, Hugh also aims to develop the charity’s voluntary income stream to ensure more care and support is available to those who need it. Hugh is married with two children aged 11 and 13, and enjoys playing hockey and golf when he’s able to. Feel free to contact Hugh directly via

Director of Retail

Lesley Gorton

Lesley has worked in the Third Sector since 2002 mainly in Charity Retail but also incorporating fundraising roles. She has been Director of Retail for two Hospice organisations, joining DEBRA as Director of Retail in February 2018. Prior to working in the charitable sector Lesley worked for the John Lewis Partnership, both as a shop floor manager and as a buyer. Lesley is  passionate about retail and charity retail in particular, she has served several terms as a Director of the Charity Retail Association.

 Lesley lives in Buckinghamshire and has a grown up daughter. She is a great ‘foodie’ and loves to cook and eat out. Other hobbies include playing bridge (badly) and traveling.

Wendy's story

Wendy's story

“DEBRA has been brilliant helping us fund a hoist to help me turn over in bed and a washer/drier to cope with all the extra washing..." 


Make a difference

Make a difference


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