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(Forwarded message from Kees Paap) ---------- Forwarded message ---------- Date: Tue, 9 May 1995 00:29:15 -0400 From: Lynda McKenzie <[log in to unmask]> To: [log in to unmask] Subject: information bank Hello to everybody! As a guest of Al and Lynda in Milton, Ontario, and a participant at the conference at the Inn on the Park on Saturday, May 13, I met Barbara Patterson twice. We spoke about the exchange of informationand about the Information Highway. Today we visited Niagara Falls. I think it would be as difficult to stop the flow of information via this media as it would be to stop the flow of water over the Falls. I am impressed by the exchange of information through this list, but it's still just part of all the information available worldwide. Let me introduce myself and inform you of the history of the Parkinson's Information Bank International (PIBI). My name you already know, my age , 45. PD for 5 years married, with 2 children, a girl 17 and a boy 14. Living in Holland , traffic engineer, working at home for 20 hours a week, (at least). In January of this year I started to build an informatin bank. I wanted to make it a non-profit organization. The European Parkinson's Disease Association (EPDA) heard about my initiative and wanted me to do it for them. Meanwhile I started to co-operate with Geert Arien from Belgium. EPDA didn't seem to be in a hurry so I started to organize a meeting between those who were knowledgable about information programming in Europe. This time the EPDA got into the act. The meeting in Utrecht was a great success and we formed a group with Jean Pierre Lucas as chairman. Meanwhile Geert and I continued to build the PIBI. April 24 PIBI was officially founded in Holland and Belgium followed in May. What do we want to achieve? We want to assimilate the information from all over the world to inform patients, neurologists, students , caregivers, researchers, and anyone else who is interested about PD. All the information available about medicine, operations, investigations, trials, experiences of patients, side effects, anonymous personal information, statistics, alternative treatments, scientific magazines, publications, books, articles, hobbies, societies, etc... Besides this, a network should be built in which all people concerned with PD can be connected to each other and to the information bank. We want to work with any existing operations and would appreciate hearing about any you might know of. The only way we can win against PD is to work TOGETHER!!!!! We will make Parkinson's a bad memory.... Kees Paap