CFW UPDATE

Lopen Voor Lucht (Walking for Air):
From Nispen to Rome

THE NETHERLANDS - On June 3, 2007, Marc Bastiaensen will start a 2200 kilometer walking tour from his birthplace of Nispen, a small village in the south of The Netherlands, to Rome. His journey will take him through Belgium, Luxemburg, Germany, and Switzerland before arriving in Italy. He aims to raise 100,000 for Cystic Fibrosis Worldwide (CFW) and estimates that the walk will take four months. Many people have accomplished this walk - but this one is different. Marc has cystic fibrosis.

CF is the most common genetic disease among the Caucasian population. It primarily affects the respiratory and digestive systems, causing the pancreas and lungs to secrete thick mucus. The body’s ability to move salt and water throughout the cells is also compromised. Marc is a CF patient in good health. He hopes that by completing this walk other patients will realize that they do not have to completely rely on medical care for their quality of life. “I want to be a positive example and I hope that my walk can stimulate these patients to try a little bit harder and to show that you can reach a higher quality level of life my yourself,” he says.

Marc was diagnosed with CF at age five. Years earlier, his young brother had mysteriously died - and now Marc knew why. His parents were told that he would not live long - now he is forty-two years old. He credits his optimism and fighting spirit for this survival. He stays in shape through playing squash, mountain biking, running and long distance walking. More than twenty years later, he feels stronger than ever. In 2004, Marc suffered from bleeding in one of his lungs. Coupled with the CF-related death of a girlfriend two years earlier, he realized that he had reached almost all the goals he set for himself. Like any good athlete, Marc chose to set more goals which included sharing his energy and optimism with other CF-patients.

Living in a welfare state like The Netherlands means he received the best medical treatment a CF-patient can get. Marc realized that not all CF patients are so lucky. Thus began his quest to help CF patients in developing countries. He decided to embark on a long-distance walking tour to show other CF patients that it is possible to have a good life if you put enough energy into it; and to raise money for CF patients in developing countries.

Marc and his brother Patrick teamed up to start the organization “Walking for Air” to help promote his tour. The brothers heard about CFW’s project in India/South Asia and decided that the fruits of their labor would go towards developing the South Asia CF Trust. According to Christine Noke, Program Director at CFW, “the main objectives for CFW to assist India include spreading awareness of CF in India, supporting activities that provide care for all CF families, and strengthening the development of the South Asian Cystic Fibrosis Trust.”

Although CF is often classified as a Caucasian disease, it is suspected that there could be 1 in 40,000 patients being born with CF in South Asia each year. An Epidemiology study is being planned as part of CFW’s program to determine the true numbers of patients throughout South Asia.

The Great COFE your heart out!

A remarkable and inspiring Dutch born 41 year old Australian man with CF is planning an epic bicycle journey across Europe in order to raise awareness and funds for CF Research. His name is Walter van Praag. The Great COFE stands for Cystic Orient Fibrosis Express. The route was inspired by a brochure of the Orient Express Bicycle Tour and roughly follows the 4000 kilometer route of this famous train journey. Walter and his team hope to average 60 kilometers per day and will visit many towns in many European countries.

With him will be a writer, a medic and a physical therapist and other people coming and going. The ride is open to anyone who has knowledge of CF issues or media related skills. Most of the people on the ride will be totally self-funded, however the team is seeking organizational advice, funding and sponsors to help arrange press conferences, venues and support infrastructure for the ride – particularly a support vehicle or van. Approximately $50K - $100K in goods and services is required. Support along the way is expected, and all surplus funds will be donated to Cystic Fibrosis Research.

Currently the plan is to leave Paris on July 28, 2007 and arrive in Istanbul on October 6, 2007. If you are interested in joining Walter for a week or two please contact him! However, due to the possibility of cross-infection, other people with CF cannot come along for the ride. For full details and updates on the planning please visit this site: http://cofe.pledgepage.org/

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