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
- to broaden our representation
- 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.