EB charity DEBRA appoints new Chair of Trustees
DEBRA, the patient support organisation for people affected by the genetic skin blistering condition, epidermolysis bullosa (EB), has appointed a new Chair of Trustees.
Following a thorough recruitment process involving both internal and external candidates, Carly Fields, has been chosen to take over this crucial role at DEBRA, one of the largest funders of EB research globally. Carly will take over the role from October 1st succeeding Jim Irvine, who has served as Chair for the last six years.
Carly, who has lived experience of EB (her daughter Naomi has EB), is well-known to DEBRA. She has been a member of the charity since 2014 when Naomi was first diagnosed and has served as a Trustee since 2019. In 2020 she was appointed Vice Chair of the Board, and she has also fulfilled the role of Chair of DEBRA’s Charitable Purposes Committee.
During her time with the charity, Carly has championed Equality, Diversity, and Inclusion (EDI), and has strived to ensure that equity and inclusion is imbedded into all aspects of the charity’s work. She has a passion for innovation and collaboration and brings significant media and commercial leadership skills to the role.
Commenting on her new appointment, Carly said:
“It is a privilege to be able to lead DEBRA as their new Chair of Trustees. DEBRA is a charity who helped our family so much when we first were told of Naomi’s EB diagnosis. I want to ensure that any family impacted by EB has the same access to support as we did; it truly is life-changing for anyone facing the unknowns and the heartache of such a painful and challenging condition. I first joined DEBRA’s Board to understand more about the hopes on the horizon for people with EB. I stayed and subsequently accepted the role of Chair because I truly believe that there is hope on the near horizon through drug repurposing projects, which we are actively involved in and pursuing further. We now need to accelerate our plans and with the support of like-minded donors and supporters, we can move ever closer to effective treatments for all types of EB.
“While we focus on transformative drug repurposing, we must also continue to learn from and meet the needs of all those with EB today. To do that, we will strengthen our links with the EB community to understand where they most need help and to ensure that the services we provide continue to improve their quality of life today.
“We are well underway on our journey; now we need to make bold moves and be ambitious to secure effective drug treatments, to strengthen our community, and to be an advocate for everyone with EB. “
About EB
Epidermolysis bullosa (EB) is a group of rare and incredibly painful genetic skin blistering conditions affecting an estimated 5,000 people in the UK and 500,000 globally. EB causes the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wing it is often referred to as ‘butterfly skin’. EB can affect the hands and feet only or in the most severe cases any part of the body, including blistering on the eyes and internal organs. People living with EB live in constant debilitating pain. EB is currently incurable and in severe cases it can be fatal.
About DEBRA
DEBRA is a UK national medical research charity and patient support organisation for people living with or directly affected by EB. DEBRA relies on the income generated by its charity shops and fundraising activities to provide care and support for people living with EB, and to fund pioneering research to find effective treatments for every type of inherited EB.
