Dear Readers,
At the time this issue of the newsletter comes at your
desk I already have stopped as president of CFW. I started to volunteer
as treasurer for ICF(M)A in 1998. Two years later, in 2000 in Stockholm,
I was elected as president after my predecessor Ian Thompson had finished
his term of four years. Ian stimulated me very much to nominate myself.
I was not so convinced, because I wanted a dramatic change in the policy
of ICF(M)A. First I found it very important to work closely together
with IACFA, and second I found it very important to support developing
countries directly and systematically in their aim to improve the care
for cystic fibrosis. I realized that to reach these aims it would cost
a lot of energy, because such a big change in a rather rusty organisation
is a big challenge. It was impossible to do this job with volunteer
board members who all had a busy job. Jan de Laat, a close friend of
mine, has a construction consultancy office called Van Aarle De Laat.
He offered me an office, all office facilities and a secretary one day
a week. Gina Steenkamer began working for CFW and learning about CF
for the first time. After one year, we expended her job to three days
a week, and up to now she does a wonderful job. But don’t be mistaken,
a secretary does not mean less work. No, it means other, but more work.
So I contracted Christine Noke first as webmaster, now she is our Program
Director and the webmaster position has been taken over by Diego Verger.
We now have new people working for CFW: Jill Weinstein
is the new editor of the newsletter and Karen Craig from the USA is
the secretary. Because all these employees do a wonderful job we have
accomplished a lot... but we are not satisfied yet. There are so many
regions in the world where CF is not treated well.
Five years after my election as president, ICF(M)A and
IACFA have merged in CFW. CFW has a new structure where the Board of
Directors and in particular the president have a big responsibility
to work with medical advisors. Elections at the ECFS conference in July
2005 produced a new board. Mitch Messer (Australia) is the new President,
Peggy Green (Canada) is the Vice President, Enrique Silver (Uruguay)
is the Secretary, and Katarina Stepankova (Slovak Republic) and Ulrica
Sterky (Sweden) are new board members.
As president I had to spend at least two hours per day
to CFW. This never was a problem, because I had the energy and it also
was for the benefit of my son Rick, he had CF. Rick died in august 2003.
Dealing with the loss of Rick costs me a lot of energy and I feel I
can no longer lead CFW as a president should. That is why I decided
to stop.
CFW is wonderful association. There is a lot of work to
do. I wish the new board all the best. I will miss to work for CFW very
much. In the past few years I discovered how hard it is to find funding
for a rare disease as CF, mainly on a worldwide scale. So I hope CFW
can count on you. We all know what it is to have CF and not be treated
at all. Support CFW!
If we don’t care, who will?
Herman Weggen
Past President
