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Our trustees

Chair

Michael Jaega

Michael, who has EB, has a long-standing affinity with DEBRA, especially as his mum was one of the founding members back in 1978. He wishes to play his part in making sure people living with EB receive the best care and support available.

As a trained psychotherapist he brings invaluable experience to the role. He’s particularly interested in human and disability rights. He enjoys Aikido (a Japanese martial art), watching football and playing the drums.

"I’ve learnt so much through being a DEBRA trustee and I’m still learning all the time. I’m eager to help to shape the future of this amazing charity" he says.

 

Vice Chair

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 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."

Treasurer

Jim Irvine

Picture of Jim Irvine"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.

Jim has now been involved in DEBRA in various capacities for over 20 years. He brings both financial and business expertise from a 30 year career in the financial services industry to the Board. He is currently the Managing Director of Prytania Soloutions and chairs DEBRA’s Finance, Risk and Audit Committee.

 

Members of the Board

Simone Bunting

Simone, who has EB, has been actively involved in DEBRA’s Retail and Nominations and Governance committees for over four years. She brings retail, marketing and publishing experience to the board.

"It is a privilege to be a trustee. Many members of my family, including both of my children are living with EB. Raising awareness and funding for research are my priorities. Finding a cure in my lifetime is my ultimate goal"

 

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!"

 

James Hinchcliffe

Living with EB and needing assistance with treating his condition since his mid-20s has given James first-hand experience in training care staff to assist with changing his dressings, learning wound care techniques and analysing his pain management.

Becoming a trustee was a tangible way to make use of his skills. Since joining the Board he has taken an active role in strategic planning, testing new business, putting forward fundraising ideas and making decisions on grant and research proposals.

"I get an enormous amount of satisfaction contributing to a charity which means so much to me and many other people living with EB," says James. "Committing time and energy to a cause that will hopefully benefit me in the future balances the helplessness I have sometimes felt as a result of living with this chronic, painful and (thus far) incurable condition"

 

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."

 

Joanne Merchant

Jo, who has EB Simplex, is a Practice Manager for a GP Practice in the NHS, and together with her accountancy background, brings a variety of skills to the board.

"As a trustee, I would like to ensure that other people with the condition are better supported and informed" she says. In her spare time Joanne is interested in crafts, especially jewellery making and cake decorating. In an attempt to keep fit, she swims and does Pilates.

 

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.

 

David Wilkinson

David first became aware of DEBRA back in 1994 when he helped organise DEBRA’s Annual Dinner at the Dorchester and subsequently assisted with a further five dinners.  When David left as General Manager at the Dorchester in 2003 he continued to support DEBRA by using his contacts in the hotel industry to secure an array of fantastic prizes for raffles and auctions at DEBRA events, which have raised many thousands of pounds. “Now that I’m retired I have time available to help DEBRA in any way that the charity deems fit, and I am delighted to serve as a Trustee on the Board.”

Lackshhya's story

Lackshhya's story

"My advice to anyone with EB is to get in touch with DEBRA because it’s good to meet other families who are coping with EB to talk and share thoughts and ideas.” Lackshhya’s Mum

READ HIS STORY