Working with Charley's Fund, Princeton Strategic Communications Group, has chronicled the efforts of these Moms and the amazing scientists who joined them to talk to the FDA and Congress. To see the video produced from a congressional briefing, click on the photo below. Click here to see the accompanying press release.
Getting the FDA to accelerate approval of Eteplirsen is even more important now because of the results of the clinical trial Aidan had been on. See below.
As most of you know, Aidan participated in a clinical trial for the drug, drisapersen,in Vancouver BC for about a year and a half. 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 shas turned the rights to the drug back to the originating company, Prosensa.
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!
to send for the site, please send them to Judy Schneider