PRESIDENT'S NOTE:
Herman Weggen

Herman Weggen President CFW

Welcome to the first CFW Newsletter, produced after the decision that ICF(M)A (International Cystic Fibrosis (Mucoviscidosis) Association) and IACFA (International Association of Cystic Fibrosis Adults) will merge into a new worldwide association called Cystic Fibrosis Worldwide (CFW).

The IACFA Newsletter's readership was widespread and was appreciated by many people; not only adults with CF, but also families and others interested in CF. CFW will continue with the Newsletter in the same way.

After many years as Editor, Barbara Palys took the decision to take a step back at this particular moment of the merger. She made the choice to devote more time to her private life with her husband and her pets. It is an important decision that she made, because IACFA and the Newsletter very much dominated her life. But we all understand that at certain points it is of great importance to prioritise time for yourself. On behalf of myself and all the readers of the Newsletter I want to thank Barbara very much for all the work she did for IACFA and therefore for us all.

Sam Hillyard has worked together with Barbara for the past 8 years. She is now the Editor in charge and I have a great trust in her and have been witness to her capabilities. Sam, I hope for a long and pleasant collaboration with you.

ICF(M)A, was an umbrella association for national organisations dealing with CF. Over the past 10-15 years a lot has changed in the field of CF. New developments have been introduced, including the discovery of the defective CF gene. Also national CF organisations have developed enormously. Many countries now have CF associations, staffed by or working with professionals. With regard to these developments it seems that the targets which motivated ICF(M)A's creation 25 years ago, do not fit anymore.

IACFA was an association for people with CF (PWCF). In the past only a few individuals with CF reached adulthood. Most of them died early. This meant that it was almost always the parents or others who made the decisions about the lives of PWCF. As more PWCF reached adulthood they wanted the opportunity to make these decisions for themselves. Therefore PWCF created IACFA to support each other to enable themselves to do just that. This was not always easy for their parents and/or the professionals of the CF associations to accept.

Due to developments in treatment many PWCF who live in the so-called 'developed countries', now reach adulthood. The need for 2 separate associations is not so important any longer.

CFW is an association that bubbles with energy. A new vision and mission will be discussed between the members in Genoa. The Grant Program that finances exchange programs and scholarships will be continued and developed. The bi-annual Joseph Levy Lecture will be awarded all over the world and in the context of the policy of CFW. The formal relation with the World Health Organisation will continue and the workplan for 2000-2002 updated and more focused on concrete projects and activities. New projects will be set out with countries that want to develop CF care. For all these activities we need money! As we do not want membership fees to increase, we have to find sponsors. So a fundraising program will start.

CFW is just one player in the field of CF. We are glad that there are many others who contribute and work to improve the health and well being for PWCF. We strive to achieve co-operation with all those organisations, which include worldwide specialist groups such as Physiotherapists (IPG/CF), Nutritionists and Nurses, etc. Each continent also has its own organisations such as CFF in the US, CFWW in Canada, ECFS and the CF-Network in Europe, Cystic Fibrosis Australia, and the FLAFQ in Latin America. CFW wants to cooperate and include all the organisations that deal with CF as a charitable organisation.

I am very proud to be the President of this beautiful association and I count on the support of you all. It is for the benefit of people like my son (who has CF) and all those (known and unknown), with Cystic Fibrosis.

Herman Weggen