Seems like stuff was meant to be out by now
Yeah it stinks to admit it, but we all assumed Harvard would be out by now. Still probably out before end of the year but couid be close. The other two still have work to do, so realistically it could easily be spring or even summer of next year 
We are hoping for something late this year or in the first few months of next year. I am also upset because of all the lies about the time frame from the beginning. I think this was done purposely to garner support for participation. Everyone here is so desperate for a cure, that there would be less enthusiasm if people were told they might have some results in 18 months when everyday is a struggle.
I always take any information here with a grain of salt but even the people doing the studies were giving out much shorter time frames then it is turning out to be. Baylor said they would have genetic results in 6-8 weeks for me… that was back in January, Harvard also gave estimates of initial studies being released early to mid 2015… well thats also come and gone.
It’s great the work their doing, but the false hope these clearly over optimistic time-frames are giving people is just annoying and unprofessional from institutions like this. So from past experience we need to consider any study results to be 1-1.5 years longer than the initial estimates reported to people.
Don’t wait, try and find your own way through it if at all
Yeah thats really smart, just play human guinea pig and pop every pill or try every weird treatment you can to try to fix yourself. Look how far that has gotten us, or even worse you might fuck yourself up even more.
Combined there has probably been 100’s of thousands of dollars spent by people here trying various treatments and few have shown to have any beneficial effects, let alone cure the condition.
Yeah the whole system stinks. We are grateful to have the foundation, but they represent such an archaic way of doing research which is ingrained in our health care system. There is no reason why in 2015, researchers must wait months before getting studies approved, and then be performed at one place and one place only. What I had done in Houston could have been done at any hospital in the country and sent to them. Instead I had to wait three months before the doctor was free and then we are at the mercy of when they analyze it. Imagine if research worked as one big team, but unfortunately it doesn’t.
What It would be interesting is to know the preliminary results before they are published, because It could take one or two years to be approved and published. For example with the Italian study I think Awor talked about the private presentation of the results almost two years before they were published.
I know this is not gonna be easy due to the problem of spreading information that is not still official … but It would be great if via the foundation or whatever we could have some outputs about the results. Some people are trying whatever to fix this condition (maybe getting worse because of this) and this info (and something about next steps if any) could give some hope to wait for a potential treatment or at least to point to a more suitable protocol if somebody wants to try it by his own …
One thing I know is that Dr. Goldstein in San Diego is in contact with Melcangi and the Italian team. His treatment approach seems rooted in the implications of their research and Iimagine it will evolve as they learn more.