This is a synopsis of how our group has fared since the last meeting of E.L.E.F. in Portugal in 1995. At that time we were in a state of flux, with a comparatively new administration and were just about to move into new premises.
We have once again had very sad news in the death of Catherine Delaney R.I.P. She was one of our founder members and as secretary, was primarily responsible for getting the organisation up and running. She will be a very great loss to us and hopefully we will continue as successfully with the great work that she has done.
During the past year some of our members have been unstinting in their time, so we have been most successful in the initial organising of the administration end of the support group.
The Dominican Order have very kindly given us an office in their Day-Care Centre and we have been most successful in acquiring the necessary furniture and equipment. Much of this was bought by ourselves from money collected over the years with this long term aim in mind. We now have a comfortable office which includes
A 586 Computer with CD-Rom and modem which gives us access to INTERNET and Fax
Furniture consisting of tables, desk, chairs, filing cabinets etc.
Photocopier, which is proving most convenient,
Our Telephone Company kindly installed our phone and answering machine free of charge and we now just pay for calls. This is an up to date facility which enables us to divert calls from the office to a committee members' home line when the office is not manned and we feel that a telephone answering service is necessary. Annette Mc Garry and I met our contact for this generous offer at the Portuguese/Irish Soccer Match in Lisbon last year, so after all, despite my grave initial doubts, there was some benefit in my attending such a function.
We have found a second-hand TV and Video which we will shortly be installing for the use of members.
Mary Deegan is taking classes on the use of the computer and we hope to attract a volunteer with competence in Desk Top Publishing to help us out occasionally.
Our main work this year was targeted towards the Awareness Week Campaign. We advertised in busses throughout the country and in the Rapid Transit in Dublin. We obtained six radio interviews. We manned information desks in both Dublin and Cork. Mary Deegan addressed the pupils of Our Lady's School in Templeogue.
We produced car stickers and bookmarks which we sent to all members for distribution.
Much of the cost of the Awareness Campaign was covered by the donation we received from Navan as a result of a Shave - In, which was organised by the parents and friends of two young sufferers.
We are assembling an uptodate library of books, periodicals and articles and hopefully will shortly have these available for perusal and reference by callers to the office.
Audio tapes and videos from US and Europe will also be available for listening and viewing.
On 21st September we are organising a meeting for young sufferers in our offices and as a result of this are hoping to set up a Group for Young Sufferers. Though we have made many calls these young sufferers seem to be slow in coming forward to arrange their own get-to-gethers.
During this coming year our main goals will be to continue our awareness campaign and to involve more of the country as branches and to create a young person's group.
We are co-operating with the Council for the Status of People with Disabilities to try and have Lupus recognised as a disability by the Government and thereby any medical benefits accruing to other disabled group would automatically benefit lupus.
We are united in our feeling that there is tremendous benefit to be got from our membership of the E.L.E.F. because of the interchange of ideas and the confidence that can be engendered by belonging to a bigger group.
Barbara O Neill
E. L. E. F.
European Lupus Erythematosus Federation