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March 8, 2006.

Helen writes:

"Emily is doing well, and we have some hopeful news.

The Myelin Project UK have contacted us about an enzyme replacement trial for MLD, that a company called Zymenex, in Denmark, are going to do in October. They have completed animal testing and, toxicology reports are being done at present, but the trial should start on humans in October this year- they are hoping the drug is in tablet form, and will be a success, so even if you are not on the trial it will become available for all MLD patients once it comes to market.

This is amazing news, and I am hoping that Emily will be considered for this trials;-her picture is on the Myelin Project website, and I have emailed the drugs company twice to give her details and ask for them to consider her. I have also asked Dr. Humphrey's at the Myelin Project for a little more info on the trial, so I am clear in my mind, before I try to get publicity for this, by going to the newspapers again- I am trying not to get too excited, but of course, part of me is thinking this is it- my little girl may have a chance to get better after all!!!!
They are trying to raise 3 million Euros- for the trial and also for the families who will be on the trial- so their travel, accommodation etc. will be covered- we hope it will be in the UK, but it may be Europe (France or Germany- they are not sure yet)- either way, if Emily has a chance, I don't really mind how far we have to go !!"

Our fingers are all crossed for you Emily!!!





	What's New March 8, 2006. Helen writes: "Emily is doing well, and we have some hopeful news. The Myelin Project UK have contacted us about an enzyme replacement trial for MLD, that a company called Zymenex, in Denmark, are going to do in October. They have completed animal testing and, toxicology reports are being done at present, but the trial should start on humans in October this year- they are hoping the drug is in tablet form, and will be a success, so even if you are not on the trial it will become available for all MLD patients once it comes to market. This is amazing news, and I am hoping that Emily will be considered for this trials;-her picture is on the Myelin Project website, and I have emailed the drugs company twice to give her details and ask for them to consider her. I have also asked Dr. Humphrey's at the Myelin Project for a little more info on the trial, so I am clear in my mind, before I try to get publicity for this, by going to the newspapers again- I am trying not to get too excited, but of course, part of me is thinking this is it- my little girl may have a chance to get better after all!!!! They are trying to raise 3 million Euros- for the trial and also for the families who will be on the trial- so their travel, accommodation etc. will be covered- we hope it will be in the UK, but it may be Europe (France or Germany- they are not sure yet)- either way, if Emily has a chance, I don't really mind how far we have to go !!" Our fingers are all crossed for you Emily!!!