California here we come! I mentioned in a previous post that there is a trial study at Stanford University. We just found out about 30 minutes ago that Will has been accepted - we're so proud, his first college acceptance!
I told myself when he gets accepted, I would start a blog. Well, here we are!
We are slated to go Sept. 6 - 9.
Details on the study: It's a 13 week trial study called EPI-743. We will have to go Week 1, Week 6 and Week 13 for various tests and then do some local lab work with Will's doctor. It's a modified travel schedule for those who don't live nearby.
The results of other patients varies, but overall there seems to be a positive vibe. As a doctor described it during a Mito support group, it's not going to get someone to walk or talk who isn't already doing it, but more so, you might see results with fine tuning their abilities. So for example, Will can walk and talk, but we're hoping this might increase his coordination. Essentially the drug is not the cure, but it's a start in improving the quality of life which will hopefully lead to a cure one day.
As said by a Mito advocate, One thing that is apparent is that without donations there is no research and without research there is no cure. UMDF