Our trustee board

Jim has been involved with DEBRA in various capacities for over 25 years. He has been a trustee since 2011; 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.

Carly has been involved with DEBRA since her daughter’s EB diagnosis in 2014. She became a Trustee in 2019, Vice Chair of the Board in 2020 and Chair of the Care & Research Committee in 2021. She is also the Board champion for Equality, Diversity and Inclusion. Carly has a passion for innovation and collaboration and brings media and commercial leadership skills to the Board.

DEBRA helped our family enormously when we were told of our daughter’s EB diagnosis. Serving as a Trustee, I want to ensure that we can continue to offer that lifeline to people with EB, and that we keep forging ahead in our support life-changing research and respite.

David has been involved in DEBRA for over 20 years as an employee, committee member, trustee and now joint Vice-Chair. 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.

I am very proud to be part of the DEBRA team and able to share my experience and knowledge, particularly of finance, risk, technology, change and treasury, to support the board in decision-making as we collectively strive to achieve DEBRA’s vision of a world without EB.

Simone has been actively involved with DEBRA for 18 years since the birth of her first son who has EB. She became a trustee in 2010, Chair of Fundraising and Marketing in 2017 and, after a break of a year, Simone returned to Chair Retail and E-commerce in 2022. She also serves on the Nominations and Governance Committee.

Simone brings a broad range of skills to the board, as well as her own personal experience of Dystrophic EB. She is co-founder and creative director of an ethical and sustainable lifestyle business, Grace Sisters, and Founder of a creative agency, Studio SB. She is an E-Commerce specialist and has over 30 years experience across retail, design, marketing and publishing.

It is a privilege to be a trustee for DEBRA and be part of an amazing team who work passionately to serve the EB community. Raising awareness, and funding vital, life-changing research are my priorities. Finding a cure in my life-time is the ultimate goal.

Christo joined the DEBRA Trustee board for a second time in 2019 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 is 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.

Simon has a degree in Business and 19 years of experience working with financial software companies. Simon became a Trustee after his firstborn Dylan was diagnosed with Junctional Generalised Severe EB, and sadly passed away in 2017.

Going through that experience made me want to do everything within my power to support DEBRA and fight this condition.

I get a sense of pride knowing that I’m giving something back to a charity that was there for my family when we needed it.

Mick is a freelance TV Director who first got involved with DEBRA in 1989 after the birth of his son, Oliver, who had RDEB. Oliver sadly passed away in December 2021. 

Mick has served on the Committee for over 20 years and is now a Trustee. He runs a weekly Pub Quiz for DEBRA as well as an annual Golf Day.

Jo brings a variety of skills to the Board, as well as her personal experience of EB Simplex. She is a Chartered Accountant and formerly worked in the NHS as a Business Manager, whilst now doing some part-time financial consultancy to a Federation of GP Practices.

She is Chair of the Finance, Risk & Audit Committee.

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

Debbie has been involved with DEBRA since her grandaughter was diagonsed with EB in 2020, initially through fundraising and now as a Trustee.

Debbie brings experience in Diversity, Equity and Inclusion and over 30 years experience in communications having worked in various sectors including local government, financial services and technology.

As a family, we had not heard of EB. DEBRA provided us with information and support when we really needed it. Everyday I realise just how little is known and understood about EB and the impact this has on those who have the condition. Being a trustee gives me the chance to continue to raise awareness and support the DEBRA vision, to ultimately find a cure for EB.

Philip Evans joined DEBRA following his daughter Francesca's EB diagnosis in 1978. Francesca sadly died in 1985 aged six. He was one of the key individuals at the outset who transformed DEBRA from a small charity to the large national medical research charity and patient support organisation that it is today.

His tireless work for DEBRA, alongside his career working in the financial sector in the City of London, brought him to the role of Chairman of the Trustees for DEBRA from 1988 – 2011. Following his retirement Philip was made a Life Patron in 2012.

Alongside his busy schedule as DEBRA trustee, Philip served 34 years from 1977 – 2011 for the Queen Elizabeth’s Foundation, which was founded by his Father, developing innovative services to support almost 10,000 disabled people a year to increase their independence and achieve their goals in life. Throughout his time at the Foundation, he worked in various roles, including Treasurer, Chairman of Management Committee and Vice Chairman of trustee board.

In 2000, with the support of Eddie George who was then Governor of the Bank of England, Philip conceived and promoted Heart of the City, a charity working with companies across London. Heart of the City encouraged these businesses to ‘do business responsibly’ in order to have a genuinely positive impact on their community, workforce and environment.

From 2003 until 2007 Philip was a trustee of Ronald McDonald House Charities, which provides families a warm and comfortable place to rest, eat and relax, should their child be staying in a hospital ward away from home.

Click here to learn more about Philip's life and involvement with DEBRA.