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 mindy_lef@hotmail.com. 



Views: 440

Reply to This

Replies to This Discussion

Mindy Hi ,
My son was resently diagnosed . I am in the USA and there are no trials for Drisapersen here but only Eteplirsen . My son would have to be on steroids for 6 months in order to quality . Can you tell me if your son finished the trial ? Is he still saking the medication ? My personal email is mirthareyes1@aol.com . Any Info is really apreciated .


Reply to Discussion


Need help using this community site? Visit Ning's Help Page.



© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service