I tried emailing them instead of calling b/c i'm currently @ work. my email is bouncing back, undiverable. I can't seem to locate an email address on their website as to where to address my questions.
rec'd a response to my inquiry. "BioMarin is completing formulation work and toxicology studies and expects to initiate a Phase I Trial by the first quarter of 2010" No additional information is available at this time. Lets hope they will have more info available as we go into the fall.
i think they are smart by not giving more information. one, they are protecting themselves in case something delays the start of a trial and, two, they aren't hurting families of Duchenne with the possibility of false hope. It saves them from getting all the emails/phone calls from families saying, "But you said you would start on this date...what the #$%@?"
Another thing to consider, after PTC wasted meaningful $'s in attorney fees to fight against a family who wanted the drug that was promised to their son, biotechs are probably going to be very cautious of the information they let out now.
Parents of critically ill or dying children deserve a little more respect than that, I feel. Where are their ethics? If they could only tell us where they plan the trials to take place or some other minor bit of information, that would be better than keeping us in the dark until their attorneys allow them out to play.
Businesses like to hear from their customers. If the phone isn't ringing - its a bad thing. It is the kind of "pestering" they wish for and the reason we see so many direct advertisements from pharma's, like Viagra commercials, on tv. Its why they have toll free numbers and receptionists. If a company can't handle a little pestering now and again I doubt they have the right constitution to conduct clinical trials.