Clay is feeling well and is now on month 21 of the clinical trial. We are in conversations about our options for the Fall when Clay will reach the 24-month mark and be forced to stop the drug according to rules of the trial. Our best hope is that there will be an addendum to the trial that will allow the children to be retreated with the same drug should they relapse. We hope to know for sure within the next month. At this point Clay has one more MRI in June on this trial, and then 3 more months of pills if all is stable.
As always, there is lots of research to do. I went to the Perkins School for the Blind outside of Boston recently, as part of my Master's program. Technology has provided so many new options for people with low-vision or blindness, and I spent a day with the folks at Perkins who provide these tools, learning all about the products they offer (such as the Smartbrailler Clay uses). On the way home I met with a researcher at Schepens Eye Research Institute. Dr. Feng Chen is the lead researcher studying paths to regeneration of optic nerves. There are several possibilities that are still in the early stages, but she is optimistic that they will find a way to regrow damaged optic nerves within the next decade. It is just as complicated as bringing new brain tumor drugs to trial, but I left feeling thankful that science, and brilliant people like Dr. Chen, are working to find solutions for currently untreatable injuries and disease.
We have a research paper from Dr. Raabe on Phase 1 of the mouse-model project at Johns Hopkins, and I will post that shortly. We hope to begin Phase 2 within the next month.