| As most of you know, Vivendy (Switzerland) has cancelled their clinical testing program for the Morquio ERT project and maybe the trials as well. As parents we have waited patiently for these to take place and we are very disappointed & let down.
We were recently contacted by our genetics office at Kaiser Permanente in Oakland, CA to let us know about other clinical testings going on at Children's Hospital in Oakland, CA in conjunction with the BioMarin project. We contacted them and already participated in them last week. Dr Harmatz (a colleague of Dr. Tomatsu) & Mrs. JoAnn Johnson who are running the clinical testings, asked me to notify any families that I may know of that might be interested in participating in the program. They said they do not have a number limit of patients that could particapate and are welcoming all ages of Morquio patients to do so. BioMarin is picking up traveling expenses for the familes to participate. I enclosed the contact info below. They would be able to answer all of your questions.
As parents my wife and I have to do what is right for our child and we will support any program that is going to help our child as soon as possible.
Take care and we hope all is well with everyone.
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