Hi Jay,
Thanks for sharing your experience. You must be so frustrated with how long this is all taking - having seen the positive response in your daughter. I think Neuren are taking the best path with partnering a big player. If it ends up being someone like Biogen they will have the appropriate horsepower to manufacture, distribute and market the drug. They will be looking for returns on their investment so I would be pretty confident they wont be stuffing around.
2nd species trial should be all but complete at this point. There hasn't been a blip of a safety concern so i don't expect any issues.
FDA has agreed to a 6 month trial so hopefully they are in business 2H 2019 and your daughter can have the treatment she so deserves.
Many of the people on these forums have expressed their empathy for the sufferers and their families - this is about more than money for many of us.
We wish you all the very best.
Hi Jay, Thanks for sharing your experience. You must be so...
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