The Neurofibromatosis Association Restructuring Plans

From the June, 2001 Newsletter

As readers of "Neuro News" may have noticed from our recent activities and newsletters the Association is going through a restructuring phase. The aim is

1. to broaden our representation
2. to roll out a wider range of support services to an increased number of sufferers and their families.

There are two key elements supporting this goal, (a) the completion of a Strategic Plan (b) the role out of a Publicity Campaign aimed at Nf sufferers, their families also at the medical and teaching profession. Part of the implementation plan is the setting up of Regional Groups. Starting in the autumn meetings are planed for seven centres throughout the country (see diagram).

The publicity Campaign will include the publication of articles on Nf and the Association in the local and national newspapers, Medical Journals etc. Additionally a poster campaign is planned for Notice Boards in Hospitals, Medical Centres, Doctors Surgeries and Dispensaries etc.

Despite a proactive campaign over the past 15 years many sufferers and members of the medical profession still have not heard about Nf or the Nf Association. Therefore we must continue to focus our attention at addressing this problem. Ideally we would like to be able to reach out to everybody with Nf and thereby have a stronger voice when representing people's needs. However without your support we will not get Groups off the ground in every Region. We are looking for volunteers so please give us a call today if you can assist in any way.

1. The above structure has provision for two full-time officials

a. 1 Full-time Administration Official
b. 1 Family Support Worker
c. It is intended that the Health Boards Counselling Service will compliment / support the Association Family Support Worker in providing an ongoing comprehensive range of services to sufferers of Nf and their families.

2. Six Regional Co-coordinator Groups to liase as necessary with sufferers and Health Boards.

3. The proposed structure to be funded by a combination of voluntary donations/fundraising and Dept of Health/State Bodies Grant Aid.