The Great COFE for Cystic Fibrosis: CF Worlwide Newsletter

Thursday, March 08, 2007

CF Worlwide Newsletter

Dace Shugg has helped me tremendously over the past few months. Full of energy, great suggestions and wonderful contacts. For those of you in the know, Dace is a volunteer assistant editor of the Cystic Fibrosis Worldwide newsletter. The following appeared in their 9th edition newsletter:

Click the image for an almost readable version:

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Read All About It!

To read the whole blog right from the beginning why not go here: www.vanpraag.info/blog. There we have ordered the articles right from the start especially for those of you who can't wait to read the book!

Click here for route detail. This is a blog-site, so for the beginning of the ride start in July, then August, then September and October 2007. For info on the preparations go to earlier articles! This site has a lot of photos, please be patient with loading times.

The ride was partly sponsored by The Mad Bomber, Patagonia, Batavus, Martin Quelle, Roche Pharmaceuticals, and a large amount of funding from Tasmanian fund-raisers and others from all over the world. Despite the enormous support received the team was still mostly self sponsored, each rider volunteering three months of their time and helping fund their expenses significantly.

Throughout the 72 day ride film maker Lucas Li from Canberra shot 50 hours of digital video footage out of which we are now making an inspirational documentary on a shoestring budget. The reason we make a documentary is to show people that living with CF at home is not all that much different from living with CF on the road. We will name the documentary; Coughing the Distance.

Coughing the Distance is intended to provide inspiration and encouragement to other people from the CF community. The message is that despite our medical dispositions we can still do some pretty exciting stuff! This documentary is going to be positive, fun and show how with CF and despite a limited lung capacity we can have a great quality of life! We also hope to mail a copy of it to all CF clinics in the world, complete with a small book about the journey.

I have had CF all my life (it is after all genetic!) and I know my body, the medicine, my problems, the complications and how to deal with the situation. When riding this distance across Europe I looked after myself much the same as if I was at home, and the documentary will show how coping with CF does not have to stop you from leaving your home!

How it all started...

I (contact me) was born in Holland almost 42 years ago, diagnosed with CF at age 10 and moved to the clean air in Australia when I was 13 years old.

Just over a year ago I decided to cycle the Orient Express in Europe from Paris to Istanbul. When my health advisor/doctor Dr. David Reid heard about this idea he suggested I do the 4000km ride for CF awareness and publicize it. One thing led to another, and The Great COFE for Cystic Fibrosis was born.

Coughing the Distance will be 45 minutes and will show myself and my team with our Batavus mountain bikes and tents, managing CF on the road and maintaining an active lifestyle.

HELP!

We are still in need of commercial sponsorship and funding to help fund our post-production and distribution costs. Do not hesitate to contact us with inquiries!

With the help from supporters such as you we can help other people with CF experience a different attitude on living with Cystic Fibrosis and provide fresh inspiration and reassurance for young parents with affected children!

Contact me by clicking !