We keep everyone impacted by EB at the heart and core of what we do to the highest possible standards for governance, integrity, and accountability.
We are registered charity (RCN 20021726, CHY No. 8703) and a registered company (No. 141279).
Michael O Rourke (Chairperson)
Michael has over 40 years’ experience in marketing and communications. He has served at senior management and director level in private and commercial semi-state companies, most recently as Director of Marketing and Communications in Horse Racing Ireland (HRI). He is currently a director of Down Royal Racecourse and has been Chairman of the Irish Thoroughbred Industry Excellence Awards committee since 2015.
Mark Hyland (Secretary)
Mark is the Financial Director at eXpd8, an IT company who specialise in providing IT solutions to SME professional sector. Mark and Ger are the parents of Alison and Erica, both born with EB.
Val Fynes (Family)
Val is a Bank Official with Allied Irish Banks. Val and his wife Maria are two of the founding members of DEBRA Ireland. Their son Aaron was born with EB and sadly passed away in 2001.
Liz Collins (Family)
Liz Collins is Debra's Parent Ambassador and mum to Claudia. Claudia was born with recessive dystrophic EB.
Sinéad Spain
Sinéad is a Director in Bridgespan and has over 25 years Human Resources and senior management experience gained across a number of diverse Financial Services organisations.
Bobby Healy
Bobby is the CEO and Founder of Manna (formerly of CarTrawler and Eland Technologies). He is an experienced inventor and technology entrepreneur specialising in booking engine software.
Dr Rosemarie Watson
Trained in dermatology at the Johns Hopkins Medical Institution Baltimore USA where she was subsequently promoted to Associate Professor of Dermatology. She was appointed consultant in dermatology in Ireland in 1992 to Our Lady’s Children’s Hospital Crumlin (OLCHC) and St James’s Hospital Dublin.
Dr Susanna Gaynor (Family)
Susanna qualified as a medical doctor in 1998 from Trinity College Dublin and works both as a GP and a specialty doctor in Breast Surgery. Susanna and Willie are parents to sons Jimmy, who has EB, and Mike.
Emma Fogarty (family)
Emma is Debra's Ambassador and lives with recessive dystrophic EB.
Tina Tully (family)
Tina Tully is mother to Kathleena who has Dominant Dystrophic EB. Tina is self-employed as a Community Development Consultant and Mediator, and has many years of experience working within the community / voluntary / charity sector.
To assist the Board in carrying out its duties and support its effectiveness, we have established three sub-committees – the Audit & Finance Committee, Development Committee, and Research Committee.
Each committee operates under a Terms of Reference, comprises both director and non-director members, and is chaired by a board director.
This committee’s work covers all matters related to audit and financial reporting, risk management, legal and regulatory compliance, and governance.
Members:
This committee advises the board on matters relating to research and supports the organisation in its work on behalf of people living with EB in all areas relating to EB research.
Members:
This committee provides objective guidance and continued feedback and engagement on the development and implementation of the fundraising strategy.
Members:
This policy explains how we process personal data – whether via personal computers, mobile devices or otherwise. Our aim is to be transparent about what we do and to make it easy for you to control the use of your data based on your preferences.
As a learning organisation, we recognise and value the importance of feedback on our work.
Contact us with your questions and suggestions either by post or email to info@debra.ie or call us directly on 01 4126924.
We will try to get back to you right away or at the very most, within two working days. Contact us via email.
We actively listen and respond to feedback so that we can continue to improve. We welcome both positive and negative feedback.
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Images and recordings enhance and illustrate our stories, making them inspiring for our audiences and more accessible to the media. The terms and conditions on the next page explain with more detail how we will use and store your photos/videos/audio recordings (referred to as images/recordings).
Debra is committed to upholding the rights of every child and young person who attends our service, including the rights to be kept safe and protected from harm, listened to, and heard. We recognise our responsibility and are committed to identifying and responding to allegations and suspicions of child abuse or neglect.
The aim and purpose of our policies and procedures are to safeguard children, young people, families and staff, which are based on and adhere to the Department of Children and Youth Affairs Children First: National Guidance for the Protection and Welfare of Children, (henceforth the National Guidance) published in 2019 and the Children First Act 2015.
Our policy declaration applies to all paid staff, volunteers, committee/ board members and students on work placement within our organisation. All committee board members, staff, volunteers and students must abide by the policies, procedures and guidance encompassed by this policy declaration and our child safeguarding policy and accompanying procedures.
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