Dear All,
This year I’m going to participate in the Duchenne 2008 Heroes mountain bike challenge. And I’m seeking donations for this challenge. (www.duchenneheroes.nl ) The minimum amount I need to collect to enter the challenge is 2500 euros. This money is needed to give the Duchenne research a boost. Investigation into Duchenne disease is progressing slowly because of the low numbers of people having Duchenne. Last year, the Duchenne Heroes collected 452.000 euros for the Duchenne Parents Project, a project that donates the collected money to the Duchenne researchers.
What do I have to do for the donations?
Well, I have to train very hard because the mountain bike challenge is about biking 700 KM in 7 days, mostly off road. We start in Luxembourg, we pass through Belgium, Germany and we end our ride in the Netherlands. It won’t be easy because the track is mostly off road and people who know Belgium, the south part of the Netherlands, and germany know that it goes up and down all the way.
Donations are being reported on the website http://www.foryourhealth.eu/duchenne and on my personal weblog on the duchenne hero’s site. Unfortunately this site comes only in Dutch. I can ride with a text printed on my shirt for the bigger sponsors and I will mention them in reports and newspaper articles.
For people who are not able to donate but are willing to help me, I ask to correct spelling mistakes in this message and to copy the message to forums on the internet. Together we can make a difference for the small number of people having Duchenne.
Foreign (outside the netherlands) donations can take place by paypal : http://www.foryourhe...nne-heroes-2008
Dutch people can donate/sponsor at : http://www.duchenneh...;selected=P3078
Below is a bit more information about Duchenne >
What is Duchenne ?
Duchenne muscular dystrophy (DMD) is a form of muscular dystrophy that is characterized by decreasing muscle mass and progressive loss of muscle function in male children. This disorder is caused by a mutation in a specific gene within the X chromosome that provides instructions for the formation of the dystrophin protein, an important structural component of muscle tissue. Females can be carriers but generally do not experience the symptoms of the condition.
Symptoms usually appear in male children before age 6 and may occur as early as infancy. Progressive muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed and eventually spreads to the arms, neck, and other areas. Early signs may include enlarged calf muscles (pseudohypertrophy), low strength and endurance levels, and difficulties in standing up and walking on stairs. As the condition progresses, muscle tissue experiences wasting and fibrosis, and is eventually replaced by fat and connective tissue. By age 10, braces may be required for walking, and most patients are confined to a wheelchair by age 12. Later symptoms include abnormal bone development that leads to skeletal deformities including curvature of the spine, progressive loss of movement leading eventually to complete paralysis, and increasing difficulty in breathing. Intellectual impairment may also be present but does not progress as the child ages. The condition is terminal and death usually occurs before the age of 30.
