Editon 4 Volume 2 CFW Newsletter
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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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SOLIDARITY FUND

2005 Solidarity Fund Application Criteria for Acceptance

The Solidarity fund contributes to the mission of CFW by providing a platform for the exchange of information and supports CF lay Association/Foundation members, volunteers and staff who are engaged in activities to improve quality of life and life expectancy for CF patients in developing countries.

This fund has been developed to increase the spread of information, offer training and improved skills to staff, volunteers and board members of CF Association operating in developing countries. This fund supports the costs involved with attending the annual European CF Conference and for individuals to travel to a CFW developed member country to work closely for a period of one week or more at an established CF Foundation/ Association or attend workshops, seminars, etc., hosted by a CFW developed member Association or Foundation.

Deadline for submission
Applicants wishing to attend the ECFC should submit their application prior to April 1st the year of the conference the applicant plans to attend. All applicants wishing to attend workshops, seminars and training session hosted by a CFW member country must submit their applications 3 months prior to the date of intended travel.

The Solidarity Fund supports applicants who are;

• Board members of a CF Associations or Foundation working to support CF patients in a developing country.*
• lay persons who act as volunteers, staff or Advisors for CF Association/Foundation working in developing countries
and seeking funds for
• travel, housing, living expenses and cost for seminars, conference registration, workshops and necessary tools i.e. books, disks etc.

The Solidarity Fund supports two types of applications

1. The applicant is applying for funding to attend a European CF Conference and the CFW Annual Business Meeting
2. The applicant is applying for support to visit a CFW Member Association/Foundation for a period of one week or longer to develop one or more of the following;
• fundraising skills,
• governing and management skills,
• strategic planning,
• programs or projects to improve the effectiveness of the CF, Association or Foundation the applicant represents.

Criteria
The applicant shall;

• represent a CF Association or Foundation that is engaged in activities to increase life expectancy and quality of life for CF patients;
• represent a CF association that is a CFW Member Association/Associate Member or an Association/Foundation that is applying for membership with CFW in the future;
• reside full time in a developing country* or the CF Association the applicant represents must operate in a developing country;*
• play a significant role in the CF Association/Foundation the applicant will represent and show sound reasons for applying for funding and what outcomes are expected.

Conditions
The conditions for funding are as follows:

• If applicant is applying to attend the ECFC, the applicant must be fluent in English. If the applicant is traveling as a guest of a CFW member association, the applicant must be fluent in English or the native language spoken in the member country.
• Fund rewards are paid to applicants in increments. 75% of the accepted budget will be paid before the applicant leaves country of origin. The remaining 25% will be paid after the submission of a progress report submitted no later than 30 days after the applicant has returned to his/her country of origin.
• Applicant must complete an outcomes evaluation 6 months after complete funding has been received.
• The applicant must provide two letters of reference from Board or managing staff of the CF Association/Foundation the applicant represents.
• The CFW Solidarity Fund has a budget of $7,000 annually to support two or more applicants yearly. Applications with budgets in the amount of $1- $5,000 are the most generally accepted but if an applicant can show justification for a larger budget the application would be considered. Applicants must submit a reasonable budget by choosing low cost airfare, hotels, etc.

Restrictions

• This fund will not support independent clinicians or individuals acting outside a CF Association to attend conferences or training workshops, seminars etc.
• This fund will not support Universities or Medical institutions or individuals acting on their behalf outside of an organized CF Association or Foundation.
• This fund will not support travel for individuals seeking clinical care abroad.
• This fund will not support per diem expenses over €30,00 per day. This restrictions does not include hotel, travel or seminar, workshops etc., costs, which are accepted in addition to daily per diem**

The 2004 Solidarity Fund was financed by generous donations from our member countries Canada, Belgium, France, UK, Ireland and Sweden.

If you, or someone you know, are interested in applying to the 2005 Solidarity Fund, please find an application on our website at http://www.cfww.org/solidarity.asp or contact Gina Steenkamer at info@cfww.org to request an application.

*The term “developing country” refers to those countries where CF is known to exist, and thought to be much more common than is appreciated by either the medical profession or the general public, and where CF services are either non existent or in the early stages of development. Similarly, the developed countries in a CF sense are those in which CF is usually rapidly diagnosed and appropriately treated.

**The term “per diem” refers for daily cost of food, entertainment and personal expenses

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