Our Trustee Board

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.”

Katy has been involved with DEBRA for most of her adult life after her brother was diagnosed with EB as a child. She has seen first-hand the realities of living with EB both as a child and adult, providing her with an understanding of the unique challenges of the condition. She has also seen the work DEBRA does across its fund-raising, research, and support over the years.

Katy has worked in Information Security for more than 20 years across various industries, including Government, Aerospace and Defence and Financial Services. She has held leadership positions including Cyber Security Director and Head of Security Operations, with responsibility for large teams and critical functions. She has experience in creating vision and purpose to drive change and unite people toward a common goal, even under challenging circumstances.

Katy brings not only her wealth of experience in Technology and Security but her drive to create change and ability to motivate and empower people. She will work to further the mission and impact of DEBRA throughout her tenure. 

“DEBRA has been a lifeline for our family since my brother’s diagnosis. I want to ensure that we continue to provide support to all families affected by EB, with appropriate risk and security safeguards in place to protect those who use our services.”

Mick first got involved with DEBRA after the birth of his son, Oliver, in 1989 who was diagnosed with recessive dystrophic epidermolysis bullosa (RDEB). A DEBRA funded nurse visited Oliver and the family a few days after his diagnosis.

Mick joined a DEBRA Committee in 1990 and was a member for 20 years before having to retire due to Charity Commission regulations. He then became a Trustee in 2020, and is currently Vice Chair of the Charitable Purposes Committee.

In addition to his Trustee role, Mick also volunteers in his local DEBRA charity shop (Chessington) two days a week with his tasks including managing their eBay listings. To help raise funds for the charity, Mick also runs a weekly (winter) pub quiz and an annual golf day.

Outside of DEBRA, Mick is a freelance Television Director best known for directing The Chase. He is also the proud winner of two BAFTA awards.

Sadly Oliver passed away in 2021, aged 32, after battling skin cancer for two years, tended by DEBRA funded nurses right to the end.

“I am proud to have been involved with DEBRA from 1990, when it was literally only a Committee and two admin staff, to the well run organisation with multiple shops and staff, it is today.

My dream is to find the elusive cure for EB in my lifetime. I know the great help DEBRA was throughout Oliver’s life, and I want to continue to support its great work.”

Gareth joined DEBRA in 2023 as a member of the Charitable Purposes Committee before becoming a Trustee. He is currently Director of People at a global management consultancy, having spent the first 16 years of his career working in and around the NHS as a clinical scientist, hospital manager, and management consultant.

“I’ve been inspired by the work DEBRA does to support individuals and families affected by EB and to fund cutting-edge research. It’s a real privilege to be able to use my experience in science, healthcare and organisational effectiveness to help the charity continue to grow its impact now and make progress towards a world without EB”.

Sandrine has dedicated more than 12 years to the wound care field, working hand in hand with researchers and clinicians to bring forward innovations that ease pain and improve healing. For her, every project begins with a simple question: how will this make life better for patients?

Her commitment is also deeply personal. As the wife of a long-term renal patient and the mother of three children, one of whom is autistic, Sandrine understands the daily realities of living with chronic conditions. These experiences have given her a profound empathy for patients and families, as well as a strong belief that their voices must shape the care and treatments they receive.

As a Trustee of DEBRA UK, Sandrine is determined to bring together her professional expertise and personal journey to support families affected by Epidermolysis Bullosa, champion patient advocacy, and help accelerate the search for better care, new treatments, and ultimately a cure.

Jas’s association with DEBRA began in May 2024 when he joined the Finance, Risk and Audit Committee. In November 2025 he was appointed as a Trustee. Jas, who is a chartered accountant, brings to the charity significant experience of the financial markets particularly within risk and audit.

He is currently a partner at a professional services firm, working in their Risk Advisory Practice, where he supports clients with regulatory, legal entity design and restructuring programmes.

“DEBRA is a great charity doing great things to support the EB community. As a committee member and Trustee at DEBRA, I want to share my knowledge of the capital markets, of financial risk and audit to help ensure the charity has the right processes and systems in place to mitigate risk and to deliver its financial and charitable goals”.