Progressive Muscular Dystrophy (PMD)

Progressive Muscular Dystrophy. Two children (one adolescent). Medical condition of elder brother becoming critical (2004).

Organisations/Institutions throughout the world began to be contacted to help us save these children. Our objective was to get together scientists, medical researchers and participants from different backgrounds to create a completely new CWIN 1 interdisciplinary research unit for this particular case.

The following proved very instructive:

- Only One University immediately volunteered to collaborate: University of Pisa, Italy.

- Not one person/organisation volunteered in Poland(!) - despite quite a strong religious (Roman Catholic) presence and influence in Polish society... - to help out regarding the two Polish(!) boys with PMD. 

- Two e-mailed letters were sent to the Muscular Dystrophy Association (www.mdausa.org): no acknowledgement, no reply. 

- Many e-mailed letters were sent to www.eurostemcell.org  including some "Top Investigators": no acknowledgement, no reply.

Makes you wonder, doesn't it...?... 

Strong Open-Minded Outward Concern And Earnest Wish To Communicate With Others on Internet and when the Media is present...  

Indifference and arrogance far from the cameras and the scene. 

You find this everywhere.

To make matters worse, the physician who was in charge of the two boys in a Brussels hospital seemed to have dissuaded the father from continuing to collaborate with the NewPOL Network. So the international call was abandoned. The last time I heard of the child, he was in a desperate condition... 

This is an illustration of how obstinate narrow-mindedness associated with international indifference can have dire consequences. The NewPOL Network offered no guarantee of success, but a world mobilisation to save the child through an open international interdisciplinary call may have sparked the discovery of a new treatment and a better understanding of PMD. The child and thereby other children with the same condition may have been saved. 

And this is exactly what happened when the same principle was applied to save an elderly lady with bladder cancer (CWIN 4-1) but in another Brussels hospital. 

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