A Brief History of NF Ireland

The first meeting of the association was convened in Cork in January 1985. The founder members were Mrs Chris Lee RIP, Mr Peter Swanson RIP and Mrs Bunny O'Connell.

The Association was originally known as P.H.O.N.E., which stands for Patients and Helpers of Neurofibromatosis. The association was subsequently renamed The Neurofibromatosis Association of Ireland. It is a mutual support group with the primary aim of informing suffers and their families of the disorder and letting them know they are not alone with their problem.

Since it's foundation the range of services provided by the association has expanded considerably. In the early years particular focus was placed in publicising the condition and getting the association established. This involved providing information on the condition, creating an awareness of (NF) among the medical profession and giving guidance and support to people with Nf. Gradually Doctors and Consultants became aware of the work of the group and referred suffers to the association.

A significant achievement by the association was the production and circulation of a video on NF. It was the first video ever made on the condition and was circulated to Medical Schools, Hospitals, Doctors and to Nf sufferers and their families.

An information exchange programme was cultivated between the Neurofibromatosis Association of Ireland, Doctors and the UK NF Association. This sharing of information and experience facilitated a vast build up of knowledge about the condition within the group. Information on the affects of Nf and progress on research was in turn disseminated to sufferers and their families.

Activities such as summer camps were organised by the UK association for children under 18. Each year through invitation and supported by the Irish Association children have had the opportunity to attend Summer Camp.

Medical experts on the condition were invited from abroad to come to speak at association meetings and workshops. The Association also managed from its limited resources to make small donations towards research.

In 1999 Mary McClelland was appointed on a part-time basis to the position of Family Support Person. This service has proven to be extremely popular and worthwhile among sufferers they're families and the medical profession.

The Neurofibromatosis Association of Ireland is indebted to the founder members of the Association for their voluntary effort also for the tremendous support they provided to the many sufferers and their families who sought their help over the years.