CFW Newsletter - Edition 7

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From the desk
From the Editor's desk Jill Weinstein
From the President's desk Mitch Messer
Mailbag
Burkholderia cepacia Deborah Henry
Conference Review
European Cystic Fibrosis Society Conference
Genetics
Screening Relatives of People with Cystic Fibrosis Bob Williamson
Is there a Clinical Benefit to Neonatal Screening? M.H. Cazes, G. Bellis, A. Nourry, E. Le Roux, S. Ravilly, A. Munck, F. Huet, and C. Marguet.
Film
A Yarn with Jaan: CF documentary film Kate Treloar
Medical/Scientific
Prevention of Cross-Infection in Cystic Fibrosis Claus Moser & Niels Høiby
CFW Update
CFW Receives $65,000 Grant from Chiron Georgia Brown
Annual Golf Tournament
CFW Grants
Country Close Up
Cystic Fibrosis in India Christine Noke & Sushil Kumar Kabra
Physiotherapy
CF & Exercise: A Physiotherapist's Perspective Peter Anderson
Alternative Medicine
Hypertonic Saline Research Peter Bye
Conference Review
New Horizons: Care of Body, Mind and Spirit Georgia Brown
Snippets & News
NUTRICIA joins the Burke Bear Campaign
CFW Online Tools
Williamson Reflects on CF Developments
Saving Lives by Remote Control
Vitamin D Repletion Regimen did not work
Computerized Shirt Monitors Breathing
Burke Bear Campaign
Order your own Burke Bear
Subscription
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SNIPPETS & NEWS


	Williamson Reflects on CF Developments

Rumours, rumours! During the past year, rumours have been circulating that there have been several promising new drugs developed that may be useful in treating people living with CF. Over the past thirty years, those who have CF have seen great improvements in treatment already, with better antibiotics, mucolytics, nutrition, physiotherapy and even transplantation. However, we all hope for further improvements. I have heard of two promising leads from the U.S. and France, one of which is a new mucolytic and the other a drug that may “traffic” the mutant (DF508) CFTR protein to the surface of the cell, where it could function more or less normally.

It is important to remember, however, that many promising leads don’t make it to the finishing post. Any new drug has to pass international tests, to make sure it is SAFE and EFFECTIVE. This is to protect patients from harm, and the health care system from a financial burden that brings no corresponding benefit. The doctors and scientists working on new drugs are just as committed as the patients and families to “make things better”, but it requires a bit of patience while all the safety checks and control trials are carried out. In the long run, that is best for everyone.

— Bob Williamson, University of Melbourne

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