As most of you know, Aidan has been participating in a clinical trial for the drug, drisapersen,in Vancouver BC for about a year and a half now. GSk and Prosensa recently announced results of this and other site trials, and the results did not meet their expectations. See their press release.
Even though most parents felt that the drug was helping their boys either get stronger or stay stable, the drug has been pulled for now. GSK says that they need to analyze the results further and may reinstate the drug later.
The drisapersen drug result timing is even more ironic as the results of this year's Run/Walk for Aidan, described below, were so great.
We don't know what this really means for Aidan at this point. There is some chance that Sarepta Therapeutics, the company that makes the drug, eteplirsen, may do a cohort study using their drug with boys who were in the drisapersen trials. This would be wonderful if it happens. We'll post updates on all this as we know more.
8th Annual Run-Walk for Aidan & Runners Reunion
August 31st, 2013
This year's run was again a great success in so many ways. It's a fundraiser (and a very successful one). It's a reunion of past runners, parents, and friends. It's a season kick-off for local cross country teams. And it's a very fun social event where you can get some exercise at the same time.
Thanks to Great Harvest, Oiselle, Natty Plunkett, and the many volunteers and supporters who come out each year to participate. The Lefflers and their families thank you very much!
See photos from this year's run.
to send for the site, please send them to Judy Schneider