In my last report which I gave you at the 7th Annual Convention of ELEF in Estoril in November last year I told you in detail of my activities. As I do not want to bore you with statistical datas such as 114 faxes and hundreds of letters which were sent to Lupus organisations in and outside Europe I would like to focus your attention on some highlights of the activities since November 1995.
Everything started very smoothly in the beginning of this year with the exchange of various letters between Anna Maria Maini and me. Then suddenly in April everything stopped. When I phoned her home I only understood from a lot of Italian sentences by her husband, that Anna Maria was seriously ill in hospital.I thought, my God, what are you going to do? You do not speak Italian. My brain was working in overdrive. Then suddenly it occured to me to phone
Marianne in Switzerland asking for help. I was lucky, her husband Lorenz speaks Italian. Then there was a phonelink Germany Switzerland Italy Switzerland Germany. The organisation started rolling again. Thank you Marianne that Lorenz helped us in such a wonderful way.
On the 9th of May I received a Fax from Italy written by Elba. Thank goodness, at last there was another Italian lady speaking English. Elba, you cannot realize how relieved I was. From then on everything ran smoothly again with lots of telephone calls, faxes, and letters including a fax of condolence when during the European football championship Italy lost against Germany.
Well, now we are in Pisa and are enjoying a very well organised Convention by Giuseppina and Elba. Thank you very much to both of you.
The Final Report for 1995 and the Application for subsidy for 1996 within the program HELIOS II were made in jobsharing. Do you know what jobsharing is? The Final Report and Application form consists of 3 pages answering questions and giving explanations of various kinds and 4 pages of figures. Brian did the answers and explanations and I did the figures. That is jobsharing.
I kept in constant contact with Miss Stiglic from FIMITIC our sector partner within the HELIOS II program and I am sure that is one of the reasons we will receive a subsidy of maximum 17,000. ECU for 1996. It is the highest subsidy we were ever granted from the European Union.
On the 21st February 1996 I attended with Frits the meeting of the FIMITIC Sector Partners in Brussels. I made a detailed report of this meeting which will be published in the next Newsletter. But let me qoute the part concerning the HELIOS II project.
HELIOS II is running from 1993 to 1996. There will not be a following program to HELIOS II. The reason for this is that there is no legal basis to finance it. Therefore there are some countries blocking a HELIOS III program.
Instead there will be an Independent European Disability Forum Association. It will be founded by 01011997. A draft of Statutes will be faxed to us on the next day. Proposals for alteration were needed by 27021996 at the latest. This association must be a Belgian Charity and urgency is needed in the application for being a charity to meet the set date.
The next meeting was to be on 04031996. A NGO in this forum must represent at least 10 EUcountries. It is not clear what will happen with the partners of the different sectors.
The European Commission has decided to establish a European Advisory Council of Disabled People which should also advise the European Parliament. A draft of the Commission's decision will be faxed soon and comments to the document had to be submitted to FIMITIC by 08031996 at the latest.
Recommendation to the Council was to made to the next meeting on 06051996.
As you can see the drafts of the Statutes for both organisations had to be commented within 5 days, which I did.
Up to this day it is unknown if there will be any subsidy in the future from the European Union. On this very day there is a meeting taking place in Brussels concerning this subject and Miss Stiglic has promised to send me a fax to the hotel if there are any decisions taken.
From the 11th 13th July 1996 I attended the Annual Meeting of the LFA representing ELEF and Brian attended the meeting as well representing LUPUS UK.
My reasons for going to Boston were manifold.
First I wanted to meet Henrietta Aladjem, the founder of the LFA, Marilyn Sousa, VicePresident of the LFA, and John Huber, Executive Director of the LFA, in person as I am exchanging letters with all of them regularly.
Second I wanted to present ELEF to the delegates more than 300 of this meeting. I did a talk of 30 minutes with some transparencies and I would now like to show some of them to you, so you are able to get an impression of the talk I did.
The talk was very well received and afterwards many delegates came and congratulated me on the fine and interesting talk I had given. Back at home I received letters from delegates thanking me for this talk and telling me how impressed they were.
At the end of July I received a letter from Marilyn Sousa. Let me quote some sentences from it.
"I can't begin to tell you what a wonderful, productive meeting it was for me to attend the LFA Annual meeting in Boston. Of course, the highlight of the meeting was meeting you and Brian and having the opportunity to meet as a group with the Canada delegates.....
Rudi, I have received so many calls and compliments on your behalf for the wonderful presentation you made at the LFA meeting.....
I hope that your plans for the symposium in Cancun, Mexico will continue to be productive. Please keep me posted.....
Since the meeting in Boston, I have reflected on many of the ideas that we had talked about. You are doing such a fine job with your work in the ELEF and an inspiration to all of us. I do hope that you can plan to attend the meeting in Phoenix, so that we can continue to share plans and the business of the international meeting in Cancun....."
During this meeting the merging of the LFA and the American Lupus Society took place. That means LFA now represents 80,000 Lupus patients. There was also an election of the President and the Board of Directors. I had the opportunity to have a very interesting talk with the new President, Terry Bell.
When we arrived at Boston we heard that Henrietta Aladjem was in hospital. But two days later I received a phone call from her asking me to come to see her at her home she lives in a suburb of Boston. She sent a car which took me to her and we had a good talk for two hours. I have to say that I felt very honoured to have been invited to her home.
I have to mention that during the three days of the meeting a lot of talks and workshops of the various kinds took place, some of them concurrently. Sometimes it was very difficult to decide to which one should go.
So, I think it was a good decision to go to Boston. We met a lot of interesting people and had valuable talks.
The third reason for my going to Boston was to have the opportunity to talk with representatives of the LFA and Lupus Canada about the program for this conference. We had a meeting on one evening and defined a possible structure of the conference. We will discuss this later during our Convention. Brian and I will meet Prof. AlarconSegovia here in Pisa and talk about this subject.
What have we achieved in the last three years?
The first 5 Newsletters have been published and distributed not only to our members but also to Lupus organisations and to interested physicians worldwide. I still get inquiries from organisations to be put on the mailing list.
The Register in the new layout has improved enormously. It is in an A5 format like a booklet and gives information not only about our members but also other useful information.
ELEF is in INTERNET with its own EMail address. We have to be grateful to Prof.Schneider and his team for giving us this possibility. It is the best publicity we can have.
We are now not only an established and valued organisation as a NGO within the European Union, but also other Lupus organisations.
We had to put very much hard work into achieving this in the last three years. I have to say that my company support my work for ELEF very generously. For up to 500. ECU per year I can use the company's telephone and Faxmachine. There is a young lady working for me who does all the input into the computer, the design and layout of the Newsletter and the Register, the printing, copying, typing the enormous amount of letters and faxes etc. You have to be aware that all this does not cost ELEF a single penny. The transparencies in colour you have seen were done by a colleague of mine and again ELEF did not have to pay. I really have to thank my company for its generosity. I have to thank the young lady, who is doing all this work, for her dedication. Without this support it would be very difficult for ELEF to exist.
This Convention ELEF is at a crossroad. The Chairman and the Members of the Executive Committee have to be elected. You know that the financial situation of ELEF does not look positive for 1997 and onwards. To keep ELEF running at least 5,000. ECU per year is needed and that is only for postage, telephone, faxes and three meetings of the Executive Committee, which I think is absolutely necessary, because it is not possible to run an organisation only by letters, faxes, and telephone. You see there are some important decisions to be taken.
At the last meeting of the Executive Committee on the 20th July the members confirmed that up to now 80 % of the work of ELEF has been done by me. I am still prepared to do a lot of work for ELEF in the future as a ViceChairman but some of the workload has to be taken from me.
In an organisation such as ELEF I think it is essential that Lupus sufferers are members of the Executive Committee. In the past it was a very difficult task to persuade a Lupus patient to stand as candidate. Although all candidates standing for election must be aware that there will be some work to be taken on, I am sure in the case of difficulties due to illness arising other members of the Executive Committee are prepared to help. I am really delighted that Carole Lindsell and Barbara O'Neill are prepared to stand as candidates.
Well, that is my report on my activities. I would like to add that all the work I did for ELEF in the past six years I did with great enthusiasm and from the bottom of my heart. The best interests of the Lupus sufferers and of ELEF were always foremost in my mind in everything I did and every decision I had to make.
I wish this Convention every success needed.
Rudolf Hocks
E. L. E. F.
European Lupus Erythematosus Federation