History of Charity
In 1988 a group of parents came together with one common goal, to set up an organisation to help their children who were born with EB. The main aim of the organisation was to provide support to raise funds to start research into the causes of EB and ultimately to find treatments and cures for EB. Working from the ‘kitchen table’ and raising funds through coffee mornings provided the stimulus to begin to work on the issue of research. A study was initiated at the Department of Genetic in Trinity College in 1992 that identified a new mutation in one of the genes which causes EB. A first step was taken towards increasing our understanding of EB.
The group also focused on providing support to families affected by EB and wished to address the need to attend for treatment at Great Ormond Street Hospital in London, a gruelling but necessary journey due to a lack of appropriate treatment in Ireland. With the support and drive of Dr Rosemarie Watson, a clinic was set up in Our Lady’s Hospital, Crumlin in 1995. Vital expertise for the clinic was provided by DEBRA UK staff (Clinical Nurse Specialist, Physiotherapist and Dietician) who attended the clinics. The next vital step was the appointment of a Clinical Nurse Specialist, funded by DEBRA Ireland in 1998, this enabled both children and adults to receive specialist nursing care, although such care was limited as it was only a part time post. DEBRA Ireland has continued to fund a part time Clinical Nurse Specialist post at Our Lady’s Hospital. Crumlin.
The organisation started with just one part-time employee working out of the Carmichael Centre on North Brunswick Street, Dublin 7 in 1997. In 1998 Margaret Webb joined the organisation as CEO and started developing fundraising events to highlight awareness of the cause and widen the supporter base as well as laying the foundations for our research programmes into EB and developing support for those affected by EB. Funding was raised for the establishment of a full time Clinical Nurse Specialist post at St James’s Hospital in 2002, the hospital then took on funding of the post. DEBRA Ireland continues to provide funding support towards equipment and training in both hospitals and funding towards the Occupational Therapist post in St James’s Hospital. Our research portfolio began to develop with projects approved at Trinity College Dublin in 2000, at Galway in 2004 and at Queen Mary Hospital, London in 2005.
Events such as the Wicklow Challenge and overseas treks were established and quickly became extremely popular amongst our supporters. Such events continue to be vital for the continuation of our patient support and research programmes. DEBRA Ireland is extremely grateful to everyone who became a regular donor to us by standing order, their support is invaluable.
In 2005, Miriam O’Callaghan became our patron after meeting the Graham family while filming the ‘Our Lady’s’ series in Crumlin Hospital. This series was a huge boost for the charity as it was the first time that EB had been highlighted to the wider Irish audience and resulted in a significantly increase to our supporter base.
By 2001 the team had grown significantly to three and had outgrown the tiny office in the Carmichael Centre and moved to Burgh Quay. Within three years, with six staff, we had also outgrown this office and we got a very kind offer from Novo Nordisk to take the top floor of their office on Pembroke Street at a reduced rent and so we were on the move. We had also increased our fundraising portfolio which now consisted of The Butterfly Ball, The Kerry Challenge, The Wicklow Challenge, Overseas Treks and various other supporter-led events.
2006 saw the appointment of our first Family Support Worker who would work directly with patients and families on an individual needs basis. This was a significant step forward in our patient support services and a welcome resource for the patients and families. This role has since significantly grown and has enabled us to reach out to and provide valuable support to those patients and families affected by EB.
In early 2007 we were nominated by actor Gavin O’Fearraigh as his chosen charity in Celebrity Jigs ‘n’ Reels. Gavin and his dance partner Dearbhla Lennon went onto win the eight week series on a public vote and raised just over €39,000 for DEBRA Ireland. This also catapulted us into the living rooms of over 503,000 households each week and we were mentioned in 4,912,653 newspapers throughout the period. Celebrity Jigs ‘n’ Reels really helped in boosting awareness of the charity and the condition.
2007 also welcomed the appointment of our first Research Manager, Dr Avril Kennan who would oversee and manage all our research projects. At this stage our projects were showing real signs of progress with researchers now having identified the faulty gene responsible for causing EB and projects in process or development at Trinity College, Dublin, University College, Galway, Queen Mary Hospital, London and Stanford University.
In May 2008 we were on the move again, this time to our current home at La Touche House, Rathmines, Dublin, where we soon faced new challenges as the economic situation worsened. However, promising developments in the area of EB research and the bravery of those whose lives are affected by EB remained inspirational motivators.