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MAILBAG ANYONE LOCAL? Dear Editor I'm curious to know if there is a CF support group in my area. I live
in Marion, Illinois. I'm 26 years old and I'm married. I don't work and
I think my wife resents me because of this. I don't have much energy and
I try to stay in good spirits, but it is very difficult when you have
no one to talk to about your illness. So I am very anxious to know if
there is any one on the planet that will listen… Jeremy
Dear Editor I just wanted to let you know that I have recently been unable to access the IACFA Website. Is this no longer on-line or is there now an alternative? I heard on the grapevine that IACFA has disbanded and merged with another organisation, and so am I to assume that there is a new Website? Hollie Fraser Editor's Response: IACFA have indeed now merged with the ICF(M)A to form Cystic Fibrosis Worldwide (CFW), hence this issue being called the CFW Newsletter. Our new Website can be found at www.cfww.org and all material previously featured on the IACFA site can be accessed from here. Please do visit as we now have a webmaster (Christine) who is specifically assigned to keep the site updated at least once a week and is continuing to develop this resource. She also publishes our Newsletter and so is very 'on the ball' with all CFW matters.
Dear Editor I noticed that the latest issue of the Newsletter (joint IACFA and ICF(M)A) did not include the usual conference review, which I believe would have been the North American CF Conference in Florida. Is there a reason for this? Will these reviews reappear in the new CFW Newsletter? Robert Peterson Editor's Response: Due to working 2 issues ahead, conference reports often appear anything up to 9 months later. By this time much of the news reported can be old. As Editor, I made the decision to try to introduce 'snippets' of research, which you may have noticed at various points throughout the past few issues. I have also been including full pages of research news (as in this issue) with up to date information - often published before they are reported on at conferences. I hope this will prove to be a good and more efficient way of passing on this information to our readers. However, if you do not consider this to be a better alternative I'd appreciate it if you would let us know. Whilst it is good to offer the space previously taken up by lengthy conference reports to more detailed, specific topic articles, it is possible that an extra conference report supplement could be justified, or a link on our website to similar such text. Give this new concept some time, and then let me know the verdict! |