skint - i dont know about Elan and Bapi I am sorry -however i will put part of one of the posts on here to illustrate that people who are related to trial patients do post stuff on the net
i had speculated same but never seen anything -not that i spend much time on the net and i am not on facebook or anything like that:
"My daughter, Siera, age 25, has Rett Syndrome and is a participate in the NNZ-2566 study and the results were amazing! Her quality of life improved drastically making me certain she was on the medication."
"My daughter was in this study as well. I saw overall improvements. She did not have any seizures, she was awake and alert, she walked independently which she has not done for several years. Her overall health improved. Stamina, walking, seizures all improved while on NNZ medication. After just a few days of coming off NNZ my daughter went right back to all of her problems...."
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