Stork Fit - Active for Duchenne Heroes

Stork Fit - Active for Duchenne Heroes

Duchenne Heroes - Together We can kick Duchenne's out of this world!

 

 

 

 

 

Stork Turbo Blading is very proud to announce that one of our employees, Johannes Groen, will undertake a journey of epic proportions, to raise money for a Dutch charity organisation called Duchenne Heroes. He will attempt to bike a 700KM, (seven-hundred-kilometers!), long trail from Belgium, through Luxembourg and finally into The Netherlands to raise money for charity. This massive journey is impressive, and he will do it all to raise money for research and the development of a new treatment for Duchenne's Disease.

 

 

 

 

 

Duchenne's Disase is a rare hereditary condition which causes muscle dystrophy and loss of muscle mass. It usually only occurs in boys and the first signs of this terirble disease can be detected as young as two years of age. Duchenne occurs one in every 4000 newborns, and there is no known cure.

It is caused by a lack of Dystrophine in the X-chromosome and causes a lack of proteins in the muscle cell's wall. This in term causes mucle dystrophy, and eventually causes the death of these muscle cells rendering people who suffer from this condition unable to use their muscles. 

This terrible disease has no known cure and it is very hard to make manageable. The only currently accepted treatment involves prescription medicine such as prednison, which acts both as a painkiller and yields a positive effect in terms of strength. This however comes at a high cost, as Prednison and other steroids have severe long term effects on health when used for an extensive period of time. This great adventure will cross through harsh terrain in the pursuit of collecting money for charity, and these Duchenne heroes literally put their lives on the line in conquering the various mount roads, steep inclines and breathtaking passes between the treelines to ensure that there is money available for research into this terrible disease. 

Stork is proud in supporting Johannes Groen, and we hope that you will do the same. We would kindly ask you to donate whatever you can miss to charity, by clicking on the link below.

This link will redirect you to the website, where you can contribute to this good cause. Please note that this website is in Dutch, but don't let that stop you from joining the fight against this terrible disease.

Support Our Duchenne Hero, Johannes Groen!

Read More about Duchenne Heroes

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