ariehs wrote:The Buffalo study is NOT releasing results to patients or their doctors. We are volunteering (as I signed up, too) to be examined for their research, not to be treated.
If you want to know your results, getting in touch with Dr. Haack or Dr. Dake are your best bets. I know I'm pushing to get on their studies, too.
Johnson wrote:Mark - my little guy is 3, and says all the time that "Da sad because Da have a bug in his head." That is already too much for him to deal with, I think. I don't want him to worry about a "bug" in his own head.
We just support him with Vit. D3, fish oils, etc, and hope for the best until later.
SandyK wrote:Mark, my daughter is 18. Since I was diagnosed at 24, I have dreaded hearing that I have passed bad genes on to her.
I just want to know that I am doing all I can for her. I think by getting us both scanned in this study it will help some. I don't know if it will ease my fears, but it is worth a look.
Mark, my daughter is 18. Since I was diagnosed at 24, I have dreaded hearing that I have passed bad genes on to her.
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