CFW Newsletter - The CFW office

It is pleasing to inform you about the latest CFW information.

This year, CFW built a solid team with Project Manager Christine Noke, Webmaster Diego Verger, Editor Ella Weggen and myself as Office Administrator.

I am very proud that our organization is an essential factor in bringing national associations from all over the world together to work on an international scale. However, we receive many individual requests—on a daily basis—seeking information or assistance for themselves or others. Therefore, with great reason, our work continues and grows.

With these projects, CFW is continuing to create connections in the international CF community and is helping developing countries improve their standards of CF diagnosis and care.

Conference
Cystic Fibrosis Worldwide was proud to be a part of the 27th ECFS conference hosted by the UK Trust. The well organized Birmingham conference was a great success. During this conference, CFW had the opportunity to hold the 2nd Annual Business Meeting on June 12, 2004. National association representatives were pleased to see that in the past year CFW has made strong progress towards its goals. To learn more, please read the CFW 2003 Annual Report posted on the CFW website: www.cfww.org

On Sunday, June 13, 2004 the UK Trust held their biennial lay conference 2004 incorporating the Cystic Fibrosis Worldwide lay programme. This programme covered many aspects of CF including: the latest research, a gene therapy update, the role of parents in adult care, the challenges of adulthood, the fear and hope and problems getting through the day, and the best clinical care.

Presently, CFW is preparing for the meetings and the lay programme to be held at the 28th European CF conference in Crete June 2005.

Solidarity Fund
CFW raised money for the Solidarity Fund which enabled lay people* (people representing CF patients associations and/or CF patient group) involved in CF in developing countries to attend the 27th European Cystic Fibrosis Conference held in Birmingham, England. It was a great pleasure to have Mr. Hafeez Ahmed, parent of a CF son, living in India and Ms. Khatuna Mgebrishvili from Georgia with us in Birmingham.

Mr. Hafeez Ahmed is a professor of fine arts at a university in New Delhi, India. His six-year-old son has cystic fibrosis. In his country, CF is virtually unknown and knowledge of effective treatment methods is rather non-existent. He believes that there are many Indians dying of CF because of the poor knowledge about the disease. Clearly, undiagnosed patients can not receive treatment.

Ms Khatuna Mgebrishvili together with our project manager Christine Noke has a main role in the effort to create a CF clinic in Tbilisi, capital of the Republic of Georgia.
The conference provided Khatuna the opportunity to meet people involved in CF work.

The CF clinic in Tbilisi is CFW’s main project and CFW plans to run projects in Latin America and in the Eastern part of the world.

CFW plans to continue the Solidarity Fund for future meetings.

Events
In October 2004, the 2nd CFW Golf Tournament will be held in the Netherlands. With the help of a gentlemen’s society Heerensociëteit van Etten tot Leur, the Dutch Charity and Sport organization, we expect a grand event. The money raised during this all day event will fund the Education and Evaluation phase of the CFW project in Georgia. This phase will develop sustainable advancements in the delivery of clinical care, in the access to medication and in the spread of education in the treatment of CF in Georgia (former Soviet Union).

Grants
Each year we receive several requests from enthusiastic people wishing to apply for the CFW Educational Grant Program. In June 2004, the board of directors approved the application of Argentinean physiotherapist, Maria Eugenia Casal, to visit the university hospital in Lund, Sweden.

Best regards,

Gina Steenkamer
info@cfww.org