Update 'Duchenne Heroes'
well, as i posted before ( but can't find it somehow),
I am not that much active lately cuz i am trying to collect as much money as possible.
Gonna be a part of 'Duchenne Heroes'.
its a big group of mountainbikers who are cycling 700 km in 7 days true 4 country's offroad.
at this moment there are 265 bikers.
some things are changed since previous time i posted this.
right now i made a team instead of being individual.
I am together with a friend of mine, teamname: 'Heroes4Duchenne'
we have to collect € 2500,- each at least, so that will make €5000,- in total.
at this moment we collected about €4000,- so, i guess we gonna make it
.
If we dont make the €5000,- there probably will be something to arrange with the organisation.
So, if you feel like you wanna donate some money, feel free to send me a pm.
oh yeah before i forget, for the ones who doesnt know what 'Duchenne' is.
Duchenne muscular dystrophy (DMD) is a severe recessive form of muscular dystrophy characterized by rapid progression of muscle degeneration, eventually leading to loss of ambulation and death. This affliction affects one in 4000 males, making it the most prevalent of muscular dystrophies. In general, only males are affected, though females can be carriers. Females may be afflicted if the father is afflicted and the mother is also affected. The disorder is caused by a mutation in the dystrophin gene, located in humans on the X chromosome (Xp21). The dystrophin gene codes for the protein dystrophin, an important structural component within muscle tissue. Dystrophin provides structural stability to the dystroglycan complex (DGC), located on the cell membrane.
Symptoms usually appear in male children before age 5 and may be visible in early infancy. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include pseudohypertrophy (enlargement of calf and deltoid muscles), low endurance, and difficulties in standing unaided or inability to ascend staircases. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD varies from late teens to early to mid 20s. There have been reports of a few DMD patients surviving to the age of 40, but this is extremely
But at this time, they are pretty close in finding the solution with medicine, BUT... not yet!
money is needed for research!
Xaver
I am not that much active lately cuz i am trying to collect as much money as possible.
Gonna be a part of 'Duchenne Heroes'.
its a big group of mountainbikers who are cycling 700 km in 7 days true 4 country's offroad.
at this moment there are 265 bikers.
some things are changed since previous time i posted this.
right now i made a team instead of being individual.
I am together with a friend of mine, teamname: 'Heroes4Duchenne'
we have to collect € 2500,- each at least, so that will make €5000,- in total.
at this moment we collected about €4000,- so, i guess we gonna make it
.If we dont make the €5000,- there probably will be something to arrange with the organisation.
So, if you feel like you wanna donate some money, feel free to send me a pm.
oh yeah before i forget, for the ones who doesnt know what 'Duchenne' is.
Duchenne muscular dystrophy (DMD) is a severe recessive form of muscular dystrophy characterized by rapid progression of muscle degeneration, eventually leading to loss of ambulation and death. This affliction affects one in 4000 males, making it the most prevalent of muscular dystrophies. In general, only males are affected, though females can be carriers. Females may be afflicted if the father is afflicted and the mother is also affected. The disorder is caused by a mutation in the dystrophin gene, located in humans on the X chromosome (Xp21). The dystrophin gene codes for the protein dystrophin, an important structural component within muscle tissue. Dystrophin provides structural stability to the dystroglycan complex (DGC), located on the cell membrane.
Symptoms usually appear in male children before age 5 and may be visible in early infancy. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include pseudohypertrophy (enlargement of calf and deltoid muscles), low endurance, and difficulties in standing unaided or inability to ascend staircases. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD varies from late teens to early to mid 20s. There have been reports of a few DMD patients surviving to the age of 40, but this is extremely
But at this time, they are pretty close in finding the solution with medicine, BUT... not yet!
money is needed for research!
Xaver
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I definitely am an advocate for raising funds for a charitable cause. But at the moment I am broke 
Please ride and have a donation for Neo Charity Foundation next time.
Please ride and have a donation for Neo Charity Foundation next time.
Update 2
We got our minimum amount of 5000 euro.
we still got things to do, so we're going for 10000 euro
This weekend we go to an organised trainingsweekend in Belgium Ardennes.
We leave early tomorrow, Saturday we ride together with 40 others 117 km, Sunday another 95 km.
So ye, wont be active this weekend
Wish me luck
Cheers
We got our minimum amount of 5000 euro.
we still got things to do, so we're going for 10000 euro
This weekend we go to an organised trainingsweekend in Belgium Ardennes.
We leave early tomorrow, Saturday we ride together with 40 others 117 km, Sunday another 95 km.
So ye, wont be active this weekend
Wish me luck
Cheers
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Finally, a short recapitulation is done
[youtube]http://www.youtube.com/watch?v=anqWbdDkQkg[/youtube]
Damn, get chickenskin when i only think about it again :)
Oh lol @ 4.49 min, is me
[youtube]http://www.youtube.com/watch?v=anqWbdDkQkg[/youtube]
Damn, get chickenskin when i only think about it again :)
Oh lol @ 4.49 min, is me
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Cool video m8, really my deepest respect for u guys 
GJ to all involved Psst Apa... do i see beginning beard or is it just mud ?
cya m8.. 
