kos_mom Posted October 8, 2012 Report Share Posted October 8, 2012 BCH's gag order seems to be working from their point of view. Posts on their Facebook page have slowed to a trickle now that we are no longer getting updates from Beth and the family. Could I encourage everyone to continuing posting to their page? The initial heavy stream was very effective in getting BCH to make not one, but two posts about how much they care about every child, even those with PANDAS/PANS. Hate for them to think the heat is off so they can now rest on their gag laurels. Posts using names are taken down, but you can refer to the girl and her family etc. Comments are mainly coming through the "Post" section in the top left hand or the "Recommendations" section. This is from a person who'd never been on FB before....am impressed that public outrage through FB postings got them to make even one public statement. Link to comment Share on other sites More sharing options...
kos_mom Posted October 8, 2012 Report Share Posted October 8, 2012 Names still available on line. Will pm you. Link to comment Share on other sites More sharing options...
kos_mom Posted October 8, 2012 Report Share Posted October 8, 2012 Someone on Free EW posted the first news story on the situation--from an Italian online newspaper. From what I can make of the online transalation, some Italian senators have asked the US ambassoder in Italy to intervene on behalf of the family. http://www.strill.it/index.php?option=com_content&view=article&id=143449%3Acalabria-senatori-pdl--gravissima-vicenda-di-e-w-a-boston-pandas-e-pitand-malattie-non-curate-nel-mondo&catid=1%3Aultime&Itemid=291&fb_action_ids=4629257606279&fb_action_types=og.recommends&fb_source=aggregation&fb_aggregation_id=288381481237582 Link to comment Share on other sites More sharing options...
smartyjones Posted October 8, 2012 Report Share Posted October 8, 2012 (edited) edit Edited October 8, 2012 by smartyjones Link to comment Share on other sites More sharing options...
kimballot Posted October 9, 2012 Report Share Posted October 9, 2012 Ok... I don't mean to be paranoid... but is the Facebook Page "Free E-------- W---" gone? I tried to look at it and it says it is not available. Link to comment Share on other sites More sharing options...
kos_mom Posted October 9, 2012 Report Share Posted October 9, 2012 I had the same experience too, but when I put Free EW in the search bar it came up. Not sure what is going on. A friend just alerted me to this blog piece on EW, which went up tonight. http://www.fightingpandas1.blogspot.com/ Link to comment Share on other sites More sharing options...
peglem Posted October 9, 2012 Report Share Posted October 9, 2012 Wow, the press in Italy carried the story before the local newspapers. How crazy is that? Link to comment Share on other sites More sharing options...
kos_mom Posted October 9, 2012 Report Share Posted October 9, 2012 Not just the press--three Italian senators petitioned the US ambassador to intervene in the case. I wonder if a single councilman in Boston has been moved to do something... Link to comment Share on other sites More sharing options...
EAMom Posted October 9, 2012 Report Share Posted October 9, 2012 I had the same experience too, but when I put Free EW in the search bar it came up. Not sure what is going on. A friend just alerted me to this blog piece on EW, which went up tonight. http://www.fightingpandas1.blogspot.com/ kudos to the person who wrote that blog post...very well written! Link to comment Share on other sites More sharing options...
EAMom Posted October 9, 2012 Report Share Posted October 9, 2012 Someone on Free EW posted the first news story on the situation--from an Italian online newspaper. From what I can make of the online transalation, some Italian senators have asked the US ambassoder in Italy to intervene on behalf of the family. http://www.strill.it/index.php?option=com_content&view=article&id=143449%3Acalabria-senatori-pdl--gravissima-vicenda-di-e-w-a-boston-pandas-e-pitand-malattie-non-curate-nel-mondo&catid=1%3Aultime&Itemid=291&fb_action_ids=4629257606279&fb_action_types=og.recommends&fb_source=aggregation&fb_aggregation_id=288381481237582 How do you get an online translation (my computer ignorance is showing)? Link to comment Share on other sites More sharing options...
airial95 Posted October 9, 2012 Report Share Posted October 9, 2012 Ok... I don't mean to be paranoid... but is the Facebook Page "Free E-------- W---" gone? I tried to look at it and it says it is not available. I think there was a facebook error - I got a facebook post asking me to re-like it b/c they needed at least 25 likes to regain their seperate URL. Should be working again now. Link to comment Share on other sites More sharing options...
kos_mom Posted October 9, 2012 Report Share Posted October 9, 2012 I got the translation by highlighting the entire piece and right clicking. There I got an option for a Bing translation. Another Italian online newspaper has written s tory--information on posts to Free EW FB, but I couldn't get the translation feature to work on that one. Link to comment Share on other sites More sharing options...
dut Posted October 9, 2012 Report Share Posted October 9, 2012 (edited) I e-mailed this state senator (not mine nor EW's), heartfelt plea blah blah, dunno if it will do anything but he's a high up honcho with an interest and if he got loads of mails.. http://www.pandasresourcenetwork.org/2012/05/23/crisco-wins-senate-vote-for-study-of-p-a-n-d-a-s-syndrome/ Edited October 9, 2012 by dut Link to comment Share on other sites More sharing options...
EAMom Posted October 9, 2012 Report Share Posted October 9, 2012 I got the translation by highlighting the entire piece and right clicking. There I got an option for a Bing translation. Another Italian online newspaper has written s tory--information on posts to Free EW FB, but I couldn't get the translation feature to work on that one. is there anyway you can copy and paste the translation on here? Link to comment Share on other sites More sharing options...
kos_mom Posted October 9, 2012 Report Share Posted October 9, 2012 Here it is--I have made a few changes to the translator text to make it more understandable and hope I have not done violence to the Italian: Calabria PDL (an Italian political party)Senators: "The Serious Affair of E.W. in Boston Highlights Untreated Pandas and Pitand Disease around the World." Monday, 08 October 2012 12:36: PDL Senators are making headlines in the story of E. W. (her full name is available on the internet). Authorities have imposed an incredible and unnecessary psychiatric hospitalization upon a 16-year-old girl, now at a hospital in Boston and taken away from her family, who wanted to treat her for her diagnosed Pandas and Lyme disease. PDL State Senators, Antonio Gentile, Giovnbattista Cabahug, Vincenzo Speziali, Giuseppe Valentino and Francis Baker say the girl was treated with antibiotics and her condition improved considerably for a time but when she was forced to stop them and take psychotropic drugs instead, her situation suddenly worsened. "We appeal," they said, "to the US Ambassador in Rome for assistance for this family." The Senators say "it is unbelievable that this situation has occured in a great country like the United States, known for its freedom and science, and it cannot and should not be tolerated." "The situation shows that these diseases continue to be unacknowledged despite clinical evidence and postive results from treatment with steroids, antibiotics and immune globulin," the Italian senators continued, "in addition to the numerous and continuing research studies confirming the insights of those in the United States who first identified these pathologies." By the way, the journalist who wrote the story posted on Free EW that he is an uncle to a Pandas child. Link to comment Share on other sites More sharing options...
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