I am suffering from Pompe Disease.

 Until the year 2002 this was not really a problem for me. 

After that year things were going worse and in a rapid way.

In 2006 I got  therapy with Myozyme for the first time.

 My improvement was tremendously.

I can play Concerts again, work in my job as a director, play with my Son, have fun.

Now all patiŽnts in the Netherlands get the therapy. Thanks to many, to publicity and to the Parliament.

I have a second Life. It is a miracle.

more

 

 

 

 

About Pompe Disease

 

 

My Life in 3 minutes before and after getting Myozyme (2007)

WATCH THE DIFFERENCE !!

The same in 10 minutes with an extended Update (2009)

 

Hollywood and Pompe Disease 

with Harrison Ford and Brendan Fraser in

Extraordinary Measures.

Watch the trailer

 

Impression of my first Piano Concert after one year of Therapy and after seven years suffering and not really playing anymore ( 2007)

 

 

 

 

Booklet:

In spite of my rapid deterioration from the Pompe Disease most of the time my fingers and muscles still enable me to play the piano. An Orphan Drug has been developed to stop the further deterioration of the illness, however until now, for me this drug is still out of reach. How it will unfold for me as a Pianist is anyone'sguess but I hope that this music will reverberate in places where people will and can hear it for a long time to come. This is my personal way to face and accept the present situation 

Johan dec. 2005

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Kathy Parsons (www.mainlypiano.com

Concert for Civilization 

'.. is a very stirring muscial work of Art that combines classical, new age, and ambient stylings in a deeply personal way..'.

2006

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I am back. I can play Concerts again !

2007

Concert Images

 

 

The music is used as soundtrack in the Odelion Film

 'Living with pompe disease',  

used in the Spanish Movie 

Espejos en la niebla,   

directed by Basilio Martin Patino 

and used for the 

U.S. Embassy Opening in Berlin  

on the 4th of July 2008. 

My music is also played in a presentation for the Federal Drug Administration in the U.S. 

This is a wonderful way to do something 'in reverse', because my Myozyme is produced in Boston (U.S.) these years!

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More Piano Music (22 video's and 2 hours of music) on my website:

www.xlpiano.com

 

 

 




 

 

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