Hello - we have gotten permission from GSK to put together an email list of parents who participated in the drisapersen study (and anyone else who just wants to know), so that when a decision comes down about the future of this study, we can receive an email from one of the orgs immediately about next steps.
My son was in the Vancouver study site, and we found the day the study was halted to be quite difficult because of how hard it was to find out what was going on. This is an attempt to get information as soon as possible to the families whose boys have given so much to this study in the exact words GSK will use. I want to prevent any families from sitting at the airport wondering if they should get on a plane to their study site.
If you would like to sign up for the list or you have any further questions, just email me at email@example.com.