we just had austin's last visit in the exon 51 skipping phase one trial. we were informed that they are in need of more boys, non ambulatory for 1-4 years, to begin the trial very soon, maybe as soon as next week. this is phase one, but, it is safe to say that if FDA approves it, prosensa will be doing follow up extension trials, and the boys in phase one will not be excluded from, and most likely will be first in line to get into phase 2 and 3. this is so important, you can email me at
jennmcnary@yahoo.com, or call 802-579-7471 and i will put you in touch with research trial coordinators. Dr. Flannagan asked me to spread this far and wide, so PASS IT ON so we can finish this trial and move US trials along!