Editon 4 Volume 2 CFW Newsletter
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Editor@cfww.org 

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Contents:
From the Editor's Desk
Ella Weggen
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line Mailbag
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Scientific /
Medical Topic
A Possible Anti Pseudomonas aeruginosa Conjugate Vaccine
Anna Rüdeberg
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line New Approaches to Therapy
Christopher Boyd
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Country Close Up
Turkey
Özgür Örscekic,
Deniz Dogru
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Birmingham Conference
Lecture Highlights: Part 2
Emma Wicks
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Book Review
For Love of Life - Laura Scott Ferris
Dawn McGuinness
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CFW Update
Elections CFW Board
Herman Weggen
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line CFW Golf Tournament Raised Eur 25,000 / Conference Crete
Gina Steenkamer
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line Update on Georgian Clinic
Georgia Brown
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line Fundraise Project
Christine Noke
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Solidarity Fund
Solidarity Fund Criteria
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line 2004 Solidarity Fund Recipient
Khatuna Mgebrishvili
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Levy Lecture II
What the Future
Holds for CF
James Littlewood
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CFW Grant Application
From Croatia to Denmark
Duska and Dorian Tjesic - Drinkovic
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Personal Experience
The Art of Attitude
Peter Hatch
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CFW Partner
International Nurse Specialist Group CF
Su Madge
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CFW Comic
Food is important
Matthew Scott Carr
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Snippets
My big fat Greek (CF) Retreat
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line Juggling Cystic Fibrosis
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CF Internet Resource
Innovative new website features educational and community content for CF patients
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line Doctors Launch Online System for Kids with Cystic Fibrosis
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Research News
The CF Foundation Urges All States to Include Newborn Screening for Cystic Fibrosis
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line Novel therapy has positive effect on lipid uptake in cystic fibrosis patients
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line NZ develops cystic fibrosis drug
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line Indie Band Simon Apple releases new album 'River To The Sea’
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FROM THE EDITOR’S DESK:


Ella Weggen, editor CFW

The newsletter is a good way to let you know about CF Worldwide developments. We are growing and our mission to improve CF care in developing countries has provided all of us with an important task. As you are aware, the infrastructure of good health care makes an enormous difference for people living with CF. Governments in developing countries along with the non-government organizations (NGOs) have increasingly larger burdens to respond to. We work to ensure that this “rare disease” is understood and that its significance is found on their agendas.

I enjoy introducing Dawn McGuinness, a new assistant editor for the CFW Newsletter. Dawn has contributed already by providing book reviews and by writing articles for the Newsletter. I look forward to her continued participation. One article that I find interesting in this newsletter is an overview of the latest approaches to CF therapy. This article is especially helpful for people that do not have access to current knowledge, recent developments, or possible resources that may become available. Of course, it is useful for all of us to read.

People with CF need to have great perseverance in order to stay healthy. The amazing thing is that most of the people I know with CF are really positive people and a pleasure having around. In this newsletter, you will meet such a person. His name is Peter Hatch and he offers some good tips about books with a positive message.

I have put quite some effort in the Newsletter in the last couple of months, and hope that my ever improving skills as Editor provide the enjoyment and learning that have our readers looking forward to each issue. I would like to thank everyone who has helped me with this edition. We will publish 3 Newsletters in 2005 so that more funding can be allocated to proposed projects. Please don’t hesitate to contact me, as your advice and support are important to all of us at CFW.

picture

This photo is of me, my brother Rick and my sister Hanne. They are, together with my parents, very important to me.
My brother Rick gives me the purpose I have in working for CFW. I still miss him every day.

Kind regards,
Ella Weggen
The Netherlands
editor@cfww.org

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