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Our trustees

Chair of Trustees

Jim Irvine

Picture of Jim Irvine

 Jim has been involved with DEBRA in various capacities for over 20 years. He has been a trustee since 2012; served as Treasurer and Chair of the Finance, Risk & Audit Committee from 2014 to 2019, and became Chair in October 2019. He brings financial and business expertise from a 35 year career in the financial services industry to the Board. 

"I’m very fortunate to be able to say that I’m one of the trustees who is not living with EB. On learning about EB, I was so touched by its impact that I knew in my heart I had to find a way to get involved." says Jim.

 

Vice Chair's of Trustees

Carly Fields

Carly is Director and Founder of Carmar Media, a specialist, printed media production company based in Gloucestershire. Having worked in the media and communications industry for 20 years, she has deep insight on how to best get marketing and editorial messages out to different audiences. She has previously served as Vice Chair and Chair of Thrupp Primary School PTA charity.

Carly’s daughter has EB Simplex/Localised and is the first in their family to have EB. Before her birth, she had never heard of EB.

She says “Thanks to DEBRA and Great Ormond Street Hospital, we are fully aware of EB and the pain and suffering that it causes. We have also witnessed the incredible resilience and can-do attitude of sufferers. I’ve been inspired by these amazing people to give what knowledge and time I can to help find a cure and offer respite through my trusteeship with DEBRA.”

Graham Marsden

Graham is a chartered surveyor with a wide range of corporate and commercial clients. He is a member of the Royal Institution of Chartered Surveyors and a Freeman of the City of London. The eldest of his two daughters has EB and he has been involved in DEBRA both in the UK and internationally for 25 years.

"As a DEBRA trustee I get the opportunity to have a say in what the charity spends its money on,’ says Graham. ‘EB has a serious impact on the lives of individuals and their families. I believe it is important that we try to make the lives of everyone living with EB as normal as possible and enable leading researchers to focus on finding a cure as soon as possible."

Treasurer 

Jo Merchant 

Picture of Jo Merchant

Jo brings a variety of skills to the Board, as well as her personal experience of EB Simplex. She is a Chartered Accountant and works as a Business Manager for a GP Practice in the NHS. She is also Acting Chair of the Finance, Risk & Audit Committee. In her spare time, Jo’s interests include interior design and crafts. In an attempt to keep fit, she swims and does Pilates.

 "As a trustee, I would like to ensure that other people with EB are better supported and informed." she says.

Members of the Board

David Bendor-Samuel 

David has been involved in DEBRA for over 20 years as employee, trustee and committee member and has he been asked to return as a trustee. He is also a founding trustee of a small charity that supports education initiatives in Sierra Leone. 

“I know that over the years being part of DEBRA has brought a huge sense of fulfilment in being part of the battle against EB in all its forms.  I’m looking forward to being of greater service in that battle again. While we have come a very long way I am aware there is still a long way to travel but I’m profoundly optimistic about the future of DEBRA and of people with EB.”

Simon Cuzner

 Simon brings 35 years of management and retail experience to his role as trustee. Prior to this, he sat on DEBRA’s retail committee, where he learnt more about how the charity operates, which he believes stood him in good stead to help DEBRA raise the funds vital needed to meet its aims and objectives.

"I believe that we all have a responsibility towards our fellow human beings, should treat each other with respect and help other people whenever we can." says Simon.

 

Becky Edwards

Trustee Becky Edwards"Both my son and my daughter have EB, so I am keen to stay close to the charity. I also have over 16 years of marketing experience across various disciplines, including brand management. Since having a career break following the birth of my son, I can now utilise my skills and experience with the team at DEBRA.

I already serve on DEBRA’s Fundraising and Communications Committee, and as a trustee, I aim to gain a greater understanding of DEBRA’s work and what the future has in store for EB. I’m professional, fair, and committed. I believe everyone should live life to the max. Smile and the world will smile back!"

Andy Grist

Andy Grist is a retired RAF Squadron Leader and Dad to Isla, aged seven, who has RDEB and who he finds an inspiration.  Having a first-hand experience of the support DEBRA provides he would like to make a difference to other EB families. 

The Grist family has fundraised extensively for DEBRA and Andy would like to broaden his involvement and commitment to the charity.  "Whilst these are challenging times for charities, we all know the devastation and pain of EB will not wait and so you have my commitment to do whatever I can to help make DEBRA the best it can be, to support people living with EB and find cures."

Christo Kapourani

Christo joins the DEBRA Trustee board for a second time after taking a break due to illness.  Christo has EB and, like many individuals with EB has developed an extensive knowledge of the condition and how it affects patients and their families. His experience of EB healthcare extends globally having lived in a number of different countries.

He is looking forward to working with the board again and particularly keen to use the opportunity to understand what is happening in the world of research and contribute his understanding of EB and his experience of EB healthcare from an international perspective.

Viv Mundy 

Trustee Viv Mundy"I first became aware of DEBRA when my second daughter was diagnosed with EB at about 10 years old. Finding DEBRA soon after that was wonderful – as a family, it gave us a whole new feeling of being part of a group who understood the problem and were being proactive about managing life with EB.

I have taken part in one of DEBRA’s committees and found it a very rewarding experience. As a trustee, I now have the opportunity to help DEBRA consolidate and progress the work that it has been doing so well over all these years so that many more people can benefit from all that DEBRA offers."

Tim Powell

"I find it inspiring that a relatively small charity is doing so much to focus on the issue of EB both in giving patient and family support and funding research." said Tim, who is a senior partner in a firm of solicitors specialising in intellectual property law. He has a scientific background with legal training, together with commercial experience in an international context.


Douglas Rouse

Douglas brings a wealth of charity experience to the Trustee board including directing and developing sector-leading, high value fundraising teams over a 16 year career which included senior management roles at The British Heart Foundation, Save the Children and WWF UK.

His success in the charity sector was preceded by 22 years in the City where he was a Director of Investment Banks Continental Illinois, First Interstate, Kleinwort Benson and Dresdner Kleinwort Benson where he led various trading teams in key international markets including the UK, New York, Hong Kong and Tokyo.

Mick Thomas

Mick is a freelance TV Director and first got involved with DEBRA in 1989 after the birth of his son, Oliver, who has Recessive Dystrophic EB.

After serving on the Committee for 20 years, eventually as Vice Chairman, before having to retire due to Charity Commission regulations, Mick has now re-joined as a Trustee and is looking forward to getting back involved.