Duchenne Heroes - Together We can kick Duchenne's out of this world!
The Duchenne’s Disease is not well known but the impact is quite severe. One of our employees, Johannes Groen, is undertaking a journey organized by Dutch charity organisation Duchenne Heroes to raise awareness and money for research and development of a new treatment. Stork actively supports his 700 km off-road mountain-bike tour.
Historically, most boys who have it do not survive beyond their mid-twenties, and those that do will be using a wheelchair by age 12 and experience social isolation. The simplest of tasks become difficult, and in the later stages, heart and breathing muscles begin to fail. Nearly 300,000 boys are living with the disease worldwide. The disorder knows no cultural, economic, or social boundaries.
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 terrible 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.
About the Journey:
The Journey starts in the heart of the Belgian Ardennes, spans seven-hundred-kilometer in 7 days and crosses through mountainous terrain and rough mountain roads to get to Eindhoven in the Netherlands. The journey takes these Duchenne heroes through Belgium, Germany, Luxembourg and Holland.
About Johannes Groen:
Johannes Groen, 48 years old, happily married and father of two, first encountered Duchenne's in 2016 when he met Lennart, little brother of a friend of his. Lennart also suffered from Duchenne's and sadly passed away in August of this year. In 2016 a team of six members already made this trip once in his honor, and gladly Lennart was able to witness the finish of the tour that year. Since cycling was already a hobby for Johannes, the team asked him to join. It made such an impression on Johannes that he didn't need to think twice, and joined as part of the Duchenne heroes.
Stork is proud to promote and assist Johannes in his journey, and below you can find more information regarding Duchenne Heroes or possible sponsoring.