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The Advocate - June 11 2007

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Cough the distance

GILL VOWLES
May 27, 2007 12:00am
Article from: The Sunday Mercury - <link here>

WALTER van Praag is planning to take his lungs on one last big adventure.

At 41 Mr Van Praag is one of the world's oldest cystic fibrosis sufferers and he is going to use his special status to raise awareness of the life-threatening disease.

In July, Mr Van Praag, of Devonport, and a small support crew will cycle from Paris to Istanbul, even though he has only 38 per cent of his lung function.

"It will be 4000km through 10 countries in 71 days and I'll need more than 1000 pills to make the distance," Mr Van Praag said. "But I want to show the world, especially those with CF and their parents, that we can still have a great quality of life if we choose to just go out and do exciting things.

"CF doesn't have to stop you from living."

Cystic fibrosis is caused by a defective gene that tells the body to produce abnormally thick and sticky mucus, which builds up in the lungs and pancreas and can result in infections.

Tasmania has one of the highest incidences of CF in the world, with about one in 1650 affected by the disease.

"When I was born my parents were told I would be lucky to make my teens," Mr Van Praag said.

"Life expectancy has improved a lot since then, with the average now about 35."

Mr Van Praag attributes his survival to living in places with clean air and his dedication to exercise.

"A lot of cystic fibrosis sufferers won't exercise because they are embarrassed about the way they cough up mucus when they do," he said. "It's true that people are always asking you if you are all right, but I always just tell them I'm fine and have coughed this distance before."

Indeed, Coughing the Distance is the title of the documentary Mr Van Praag is planning to make about his epic cycling trip.

"It will be an inspirational DVD about cystic fibrosis, not one about death and transplants," he said.

"This will possibly be the world's first positive documentary about living with CF and it will show that even with a lung capacity of below 40 per cent there is still a lot of life to be lived."

Mr Van Praag had also hoped to raise funds for research but could not find sponsors.

"Funding is going to be the main challenge of this trip and the support team have sold many of their belongings to enable them to participate," he said.

"At the moment I've only got 38 per cent lung function and it's like breathing through a straw.

"My doctor has also told me I'll develop diabetes during the trip. But this is going to be my last major feat on these lungs.

"I think the next big adventure could be a lung transplant."

Mr Van Praag's trip will begin in Paris on July 28.

More information is at www.cofe.pledgepage.org

The Advocate

Article by Alice Hansen

Tasmanian man with Cystic Fibrosis to ride 4000km across Europe

Few people would take the challenge of riding a bicycle from the base of the Eiffel Tower through several European countries with a destination of Istanbul. Few more would put their hand up if their breathing capacity resembled that of breathing through a thin drinking straw.

For Walter Van Praag, however, this cycling challenge represents another opportunity to defy any debilitation the disease places upon him. Diagnosed with Cystic Fibrosis at the age of ten, Walter refused to let the disease dampen his adventurous spirit.

Cystic Fibrosis is a progressive disease which gradually disables the body and leads to an average life expectancy of 36.8 years. At 41 years of age, Walter has not only defied this average but has embarked on ventures similar to that of a fictitious movie character.

Compared with scaling a jail wall in Northern Greece, camping in a Sinai war-zone, living for a month in a cave on the island of Crete, a leisurely cycle across Europe appears tame in comparison to Walter’s previous quests.

“When I told my doctor that I wanted to ride 4000km across Europe in 2007 he suggested that I do it as a Cystic Fibrosis awareness venture,” explains Walter, “and so the Great Cystic Orient Fibrosis Express, or COFE, was born.”

Joined by his wife, an avid cycling friend and a support vehicle, the crew is set to depart from underneath the Eiffel Tower on July 28th of this year. A staggering 3935 km (2445 miles) later the team is scheduled to role into Istanbul where they will complete the journey at Pera Palas Hotel where Agatha Christie wrote Murder on the Orient Express.

“My message is to tell the world that living with Cystic Fibrosis is not only possible, but that thanks to international research, people with Cystic Fibrosis are able to achieve feats just like any other healthy person,” explains Walter.

A determined character, Walter’s lung capacity stands at less than 40%, meaning that each breath drawn is merely half a breath. If one could imagine walking with this limited capacity, riding 60km a day for 70 days straight represents an extraordinary human feat.

The ride vaguely follows the Orient Express railway from Paris to Istanbul with stops including Vienna, Budapest and Belgrade. Along the way Walter will be visiting towns to speak publicly about Cystic Fibrosis at dinners and functions, largely supported by local Rotary Clubs across Europe.

Inspiring others by his own passion to live life fully, Walter hopes to encourage other individuals living with Cystic Fibrosis to understand that the disease does not represent a limited or incapacitated life, although it makes regular office jobs difficult.

Due to constant infection, people with Cystic Fibrosis suffer from irreversible lung damage which causes them to cough. Morning and night, and sometimes during the day nebuliser treatments are necessary to assist them in removing phlegm caused by infection from their lungs. If coughing is suppressed for reasons such as to remain quiet for periods of time, the lung infections become increasingly worse, causing irreversible lung damage. As a result, it is vital that people with Cystic Fibrosis cough regularly.

“It is very important that people with Cystic Fibrosis just cough and carry on with life, and exercise is equally as important,” says Walter, “my life is filled with regular pulmonary exercises including running, cycling, bushwalking, kayaking and outdoor sports I can do where no one hears me cough.”

Through the Great COFE Walter represents not only an inspiring ambassador but also envisages that 50 per cent of proceeds collected through donations will be injected into Cystic Fibrosis research funds nominated by the primary sponsor of each country.

“This way, sponsors donating from specific countries can be assured that the money will go to supporting research in their home country,” says Walter, “and they can nominate a Cystic Fibrosis related fund to which they prefer their donation to go to.”

Walter and his crew will not be alone during their venture across Europe. Plans are in place for a number of individuals to join in for days and weeks at a time, each bringing their own skills and motivation to experience the journey.

“Photographers and journalists from the USA and England will be joining me on sections of the ride,” notes Walter, “and people with experience in the field ranging from physiotherapists to dieticians, social workers, medics and doctors.”

Due to arrive in Istanbul on October 6th, Walter is excited at the prospect of what this long distance bike ride will do for the future of Cystic Fibrosis awareness and research. It is unlikely his adventures will end here and one can only imagine what the next global scale venture will entail.

Alice Hansen

 

PRESS RELEASE

For Immediate Release
Contact Heather Lea
250-837-4676
hclea@telus.net

 

It Isn’t Everyone Who Can Bike 4000km With A Debilitating Disease

Tasmania , Australia, December 10, 2006

When Walter Van Praag was diagnosed at the age of ten with Cystic Fibrosis (CF), a hereditary disease that progressively disables the whole body causing early death, advice from medical professionals were of little interest to him.

With curious spirit and a taste for the extraordinary, Walter began a life devoid of self-pity and flourishing with adventurous pursuits.

Somewhere between camping in Sinai war-zones, traveling with a fake blind-guide dog named Shady, living one month in a cave on the island of Crete and accidentally scaling a jail wall in Northern Greece, Walter schemed his next, more legal adventure, the Great Cystic Orient Fibrosis Express, or COFE.

The Great COFE is a long distance bike ride set to start on July 28 th, 2007 at the base of the Eiffel Tower and ending some 3935 kms (2445 miles) later in Istanbul at the Pera Palas Hotel. The ride itself will take approximately 70 days, with a daily riding average of 63km (39miles). Stops along the way will include Vienna, Budapest and Belgrade.

“Be cause I think I can cough 4000 kilometers on my bicycle,“ states Walter, “I want to encourage other people with CF to get out and cough, too!”

The average survival rate for a person with CF is 36.8 years. Walter, at 41 years of age, is already an anomaly and no doubt, an inspiration to other CF sufferers.

“OK, so I cough a lot and take a bunch of pills, but no migraines, no fits, no dementia…”

With Walter’s lung capacity at less than 40% it is like breathing through a straw, or taking just half a breath at a time. Imagine yourself cycling just 4 kilometers like that.

Walter hopes that with a little luck, the Great COFE will help spread the news that living with CF doesn’t mean an incapacitated life and can even have some good points. “For instance,” he says, “I can eat MacDonald's in between meals, order deep fried food and add extra salt on doctors orders. Cholesterol is rarely detectable with CF.”

Although the disease keeps him from working full time, Walter is highly encouraged by his doctors to participate in the activities he loves, like sea kayaking, walking in the bush, backpacking, and taking photos.

Walter hopes for 50% of all donations resulting from the Great COFE to go to CF funds nominated by the major sponsor of each country.

For more information on the Great COFE and how you can help, visit http://cofe.pledgepage.org

 

TASMANIAN ADULT CYSTIC FIBROSIS UNIT
Royal Hobart Hospital
GPO Box 1061, Hobart 7001
Tasmania
Phone: (03) 62 22 7556

Dear Friends,

The Great COFE for Cystic Fibrosis charity ride is due to start in Paris on the 28th of July and finish in Istanbul. The Great COFE aims to promote international awareness and understanding of Cystic Fibrosis and raise valuable funds to support future research in Cystic Fibrosis care.

Cystic Fibrosis is the most common lethal autosomal recessive disorder in the Caucasian population. Declining respiratory function, impaired nutritional state, musculoskeletal complications and many other complications (diabetes, liver disease, osteoporosis, to name a few) associated with the disease impact significantly on an individual’s ability to perform normal activities of daily living and enjoy a good quality of life.

I met Walter van Praag just over 12 months ago, when I began my role as the co-ordinator of the Tasmanian Adult Cystic Fibrosis Unit. His amazing drive to forge through life and take on every battle presented to him has been a true inspiration. Despite having a lung function of about 35-45% of a male his same age and height, without CF, he still manages to live a fulfilled and very active life. Walter is driven to maintain his health and makes it his priority, on a daily basis, to be involved in some form of activity to maintain his lung function….albeit maybe a little more thrill seeking from the norm we would encourage! Walter is also extremely motivated to raise community awareness of CF and support others with CF. He has also contributed to the CF Tasmania newsletter with his stories of inspiration.

I am very supportive and extremely proud of Walter’s aspirations to complete the ride and I can only hope many others will provide him with the support he requires to complete it. The international community needs to be made aware of Cystic Fibrosis, not only as a condition that is life shortening and requires a rigorous daily regime to maintain a reasonable quality of life, but that it is a condition that affects people with an amazing spirit and who strive to contribute to society despite this adversity. We should support the need for increased level of health care and research in Cystic Fibrosis by supporting the Great COFE.

Yours sincerely,

Jenny Busch
(Co-ordinator, Tasmanian Adult Cystic Fibrosis Unit/Physiotherapist)

To Whom It May Concern,

We offer this letter in support of the Great COFE for Cystic Fibrosis that Walter van Praag is organising for Europe this summer of 2007.
Walter spoke at one of our Rotary meetings last August and explained to us how he lives with his Cystic Fibrosis. The Research in CF has produced excellent medicine and equipment and proven how an energetic and healthy lifestyle can give a person with CF a productive life. Walter is a prime example of the longevity that can now be attained despite living with a chronic affliction. By cycling across Europe from Paris to Istanbul, tracing the Orient Express along the Danube, he is taking a bold and adventurous step forward to promote research and awareness of Cystic Fibrosis.

It is estimated that one in 3,200 Caucasian births are affected by Cystic Fibrosis (http://www.lungusa.org). Scientists across the world are working to understand and better maintain this complex disease, with the hope that one or more of the many approaches to therapies will lead to a cure.
As Rotarians, being part of a world wide organisation that aims to better this world, we fully stand behind Walter in his endeavour to promote awareness of Cystic Fibrosis and to raise funds for Research. We urge our fellow Rotarians to practise 'Service Above Self' and offer support to Walter and his small team of professionals as they ride across Europe.

Sincerely,

Robert van Bussel
President of
Rotary club IJmond
Netherlands


CONTACTING THE GREAT COFE FOR CF

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Walter---------------

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