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Wonderful to see that the community is keeping the momentum going even with Beth and the family under gag order.

 

There was a suggestion in the comments on the Boston Children's Hospital FB page about setting up a petition through change.org to get Elizabeth released to another facility of the parent's choosing. I know the suggestion was by someone initially defending the hospital -- but who seems to be increasingly sympathetic with the family/cause if not fully "getting it" -- but I still think idea has merit.

 

Since they are under gag order, I know we don't really know for sure what their exact wishes are, but it does sound like getting her transfered somewhere would be preferable to keepig her at BCH. Seems like this could run parallel to the media efforts. Is there anyone close enough to this to know the family's needs/wishes, but far enough from the epicenter not to be included in the gag order or to put the family/Beth in a position where they could be accused of violating it? Any attorneys out there who understand gag orders enough to guide us through this?

 

I was just on change.org's website and it seems to be down (though I can't imagine they are out of business), but there are other online petition sites incuding www.ipetition.com.

 

I know that getting Elizabeth moved to another facility doesn't reunite her with her parents, but at least it is a step towards getting her the appropraite treatment.

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I give up on posting to FB, but the Free Elizabeth Wray opening caption (not usre of proper FB name for that) is really bothering me. I have some concrete suggestions for improvement that perhaps someone way more FB savvy than I could pass on to the site administrators if they agree with my two cents on the current FB presentation:

 

Apparently, one is limited in the opening caption to a certain number of characters and someone is doing the best they can within that constraint. I don't think, however, it is doing the job in terms of conveying the gist for those new to the story.

 

Here is my stab using no more characters than the current caption:

 

"Suffering from PANDAS/PANS and lyme and taken from the custody of her parents, who refused to place her in a locked psych ward. Day 5 of her confinement at Boston’s Children Hospital. (See About on PANDAS/PANS.)"

 

The idea would be to update the confinement day number daily.

 

The Pandas/Pans description on the "About" page could use more as people unfamiliar with it are asking questions. Would be nice to have a very short description in the "About" page in addition to a web link. Don't know how limited the characters are on that page. Here's my stab at something pithy:

 

"PANDAS/PANS is an autoimmune disorder triggered by strep and other infections that causes severe neuropsychiatric symptoms in children and adoescents."

 

One could go with "pediatric" in front of autoimmune rather than the "in children and..." However, while pediatric does include adolescents, people's first thought is much younger children and Elizabeth from her picture is clearly more of an adolescent.

 

Also, I am not sure the link is the best in terms of PR. I think a link to the IOCDF page would be stronger--it is more descriptive and complete and has the advantage of being associated with a respected international organization, as well as a stellar doctor at MGH. Here is that link:

 

http://www.ocfoundation.org/PANDAS/

 

Again, just my two cents--wish I weren't such an FB novice--never went on it until this came along.

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I talked earlier today to a friend who is a former journalist and PR professional. She's been very involved in the Lyme awareness movement (she has chronic lyme that was undiagnosed for 18 years) and she and her husband run a PR agency. She (as I) was surprised that the local media hasn't been all over this with cameras at the hospital, etc. already. Her feeling was that there needs to be a hook and that the headlines should focus on the jaw dropping headlines we hear/see in the ads for the 11:00 news (e.g., "child with Autoimmune Disorder denied proper treatment and taken from parents at hospital....grandparents escorted from trying to see her...") but that with those two pieces in place, it should be an easy sell.

 

Her immediate suggestion was some kind of press release that could be distributed to national media outlets and locally, ideally tying local stories to the issue in Boston, particularly because the Wray family has a gag order and details of their case can't be featured. E.g., If a family close to us in DC can tell their story about being denied treatment by a major medical institution (then being diagnosed/treated by another well established institution), the news features that story as a lead in to what is happening in Boston. Do we know if any media folks had been involved and/or press pieces generated prior to the gag order? My friend is already overextended and can't offer to take on this project, but did offer to review/tweak/advise on anything we might have written and/or write probono.

 

Assuming that by now something of this sort is already in motion, any idea who might be involved that I could contact to see if they want to take up my friend on this offer? Please PM me if you know of anyone.

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Hayley,

Yes--a press relese would have been good. Too bad Beth couldn't have got that out before the gag order. That would have given a name for the press release. Who would do a release now? The FB page seems to be run by Pandas Resource Network; perhaps a release could be issued in their name. I'd think one would need people who could serve as press spokespeople--the press needs to know who to contact and that has to be on the release. Some of the extended family seem involved--perhaps they could do this, although not everyone is suited for this role. They would be good for inerviews, definitely. Unfortunately, it seems to come down to Pandas parents not being very organized--way too preoccupied with just getting through the day with our kids!

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Hayley,

Yes--a press relese would have been good. Too bad Beth couldn't have got that out before the gag order. That would have given a name for the press release. Who would do a release now? The FB page seems to be run by Pandas Resource Network; perhaps a release could be issued in their name. I'd think one would need people who could serve as press spokespeople--the press needs to know who to contact and that has to be on the release. Some of the extended family seem involved--perhaps they could do this, although not everyone is suited for this role. They would be good for inerviews, definitely. Unfortunately, it seems to come down to Pandas parents not being very organized--way too preoccupied with just getting through the day with our kids!

 

 

Yes, it does seem to be pandasresourcenetwork (Lyn Johnson) who is, at least partially involved.

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Good thought. How about PANDAS/PANS? I think PANDAS may be more well known. Also, it would be interesting to know if Elizabeth's current condition was set up by a prior strep infection--since Beth used the term PANDAS I suspected that was the case.

 

I'm not sure I'd assume that without getting some sort of insider info. Not sure about Beth's views on lyme. I agree with you that at the very least, we should use both PANDAS/PANS.

 

 

Jay had FB prior to the gag order, that she had tested CDC positive for lyme, also had tested positive for mycoP, several parasites, and yeast. Never mentioned strep. Apparently, her symptoms started earlier in the year, and she was doing well on abx, until September, when they apparently suspected that the trigger might have been a reaction to cipro. Beth was using the term PANDAS/PANS. As LLM said, I would not presume anything, and I agree that we should be using the terms PANS and/or Lyme and/or PANDAS/PANS/Lyme.

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I sent a private message to the FB page admins and they are exploring whether anything was in progress or if this is something they'd like to pursue. Wondering if we could appeal to the OCD foundation or another established organization that relates to our cause to be a point of contact for this.

 

Has the media covered any of this? It seems hard to believe that they would not have picked it up by now locally at least? Anyone in Boston know?

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Hey guys, I know it's been a while since I posted but I wanted to let you know that we are in the process of organizing a rally/protest outside of the Boston Children's Hospital in support of the Wray's and to spread awareness for PANDAS/PANS.

 

This will be an organized rally with professional signage that Lynn (PRN -- and Laurensmom on this forum, I think) is having printed and we will have printed literature and educational materials to offer anyone that will take it from us!

 

The TENTATIVE date is next Thursday from 8am-3pm --HOWEVER, this depends on if we get the permit on time. We may have some media coverage as well. It's looking very likely that we will. If any of you are in New England and would be interested in coming down - PLEASE DO.

 

Let's be heard AND seen for our children!!

 

Hope everyone is well!

 

 

Word has come back from the Mayor's office, that no permit is required, but there cannot be any signage on sticks or poles, because of the potential for it to be used as a weapon. But, handheld signs are fine, as are t-shirts. Also, my understanding is that it will also be held on Friday and Saturday. I will be there one of the days, and am planning to come up by train (PM me if you want to try to meet up on the train...I'm leaving from Trenton at 5:45 a.m., and plan to go on Friday. it would be nice to have someone to travel up there with.)

Edited by tpotter
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