Time to Make Some Noise

[MomWithOCDSon]

I'm sure a number of you have also received this latest news from Beth via email.

 

My DH has already posted the story to the IOCDF Facebook page, but we need to reach out as far and wide as we can to see if we can help this family get their daughter back.

 

Beth's message is as follows:

 

It is with a heavy heart that I inform you Elizabeth Wray was placed in the temporary custody of the State of Massachusetts this afternoon.

 

This is a picture of Elizabeth's parents, Carrie and Jay. They did absolutely nothing wrong. They are caring, lovely people whose daughter was diagnosed with PANDAS/PANS by two different physicians, and they diligently sought appropriate treatment for her. The Wrays were greatly comforted to know how many of you wrote me to express your shock and support to last night's email. They have asked me to publicly share their story because they are going to need your help to get their daughter back.

 

Please reach out to any media contacts you may have.

Edited October 3, 2012 by Sheila Rogers

[Dedee]

I agree.....What a nightmare for this poor family. Tell me who / where to send a letter or e-mail. Give me an address to the hospital or CEO. I'm ready and willing!

 

Dedee

[MomWithOCDSon]

I agree.....What a nightmare for this poor family. Tell me who / where to send a letter or e-mail. Give me an address to the hospital or CEO. I'm ready and willing!

 

Dedee

 

Here's their mailing address:

 

By Mail:

Boston Children's Hospital

300 Longwood Avenue

Boston, MA 02115 USA

 

And here's their leadership:

 

They also have a Facebook presence. I'm not really into FB, but I know a lot of people are. Should we post on their page? Something neither threatening or malicious (FB would probably remove anything shrill or potentially slanderous, anyway), but openly questioning their tactics?

Edited October 3, 2012 by Sheila Rogers

[dut]

Me too...

[MomWithOCDSon]

DH just emailed Michael Jenike to see if he can do anything to help. He and Jenike had a good discussion during the IOCDF this summer, and he said Jenike kept encouraging him (and others) to email him. This seems like a perfect use (rather than abuse) of such an invitation!

[MomWithOCDSon]

Folks --

 

I shouldn't have posted the list of names/titles at BCH previously -- my bad. Sheila's edited it, as is appropriate for this forum, and she was kind enough to post it as a link.

 

But if you're having trouble with the "Leadership" link for any reason, PM me and I'll gladly share!

 

Sorry ACN and Sheila . . . I'll behave from now on!

Edited October 3, 2012 by MomWithOCDSon

[EAMom]

Hello,

if anybody has PANDAS stories that are willing to share PM me...I'll give you the e-mail of one of the PANDAS moms who is trying to help out this family. (She would post herself but is pretty swamped at the moment.)

 

This mom is compiling a list of contact info that the IOCDF will be sharing with a Boston Globe reporter. Please let her know if she can add you to the list. What would be especially helpful are stories re PANDAS and BCH.

[kimballot]

I received Beth's email and saw an earlier post on her facebook page... but I am wondering if anyone knows any specifics about this family. From the facebooks posts it looks like anorexia is an issue. Are details posted/ published anywhere. We were in a similar boat and had CPS involvement at the height DS exacerbation. I would love to help in any way I can, but I don't want to be a bull in a china shop... any links would be helpful. Thanks!

[LNN]

I'm not particularly FB savvy but am all for a coordinated effort. This is horrific. EAMom or nancy- not to put you in the coordinator's seat, but aside from stories for a reporter, is there any action that IOCDF feels would be more or less effective? Emails and posts are easily deleted by administrators who don't want to hear the noise. And as Kimballot said, it's harder to lay out a rational objection when you don't have many details. Not trying to pry into this family's personal grief or make their story more public than they'd like. There is, after all, a child's right to privacy.

 

It seems like there'd be no shortage of support from this forum, the FB pages, the non-profits. But there should be a coordinated, focused effort. This could really be a rallying point. But not knowing hospital politics, what makes administrators pay attention (aside from news stories, which seems to be underway)?

 

Second, if appropriate, has anyone closer to the situation found out what sort of support this family needs? Is there a way to send them messages of support? Is there a need to create a donation site for legal defense? (what was the site that was used to raise money for that bullied bus monitor in NY?)

 

It seems like this is a role for one of the non-profits to coordinate - whether it be one of the FB groups, Beth, IOCDF - we are the soldiers. Tell us where to march. Please let us know what your contacts have to say. thanks!

[mama2alex]

Here's a link to BCH's Facebook page: http://www.facebook.com/search/results.php?q=BCH&init=quick&tas=0.6435825145516316#!/BostonChildrensHospital?fref=ts

 

Lots of folks are commenting on this sitation.

[LNN]

Here's a link to BCH's Facebook page: http://www.facebook.com/search/results.php?q=BCH&init=quick&tas=0.6435825145516316#!/BostonChildrensHospital?fref=ts

 

Lots of folks are commenting on this sitation.

Ok, it took me a long time to figure out how to do it, but I did post. Would still like to do more.

[MomWithOCDSon]

I'm not particularly FB savvy but am all for a coordinated effort. This is horrific. EAMom or nancy- not to put you in the coordinator's seat, but aside from stories for a reporter, is there any action that IOCDF feels would be more or less effective? Emails and posts are easily deleted by administrators who don't want to hear the noise. And as Kimballot said, it's harder to lay out a rational objection when you don't have many details. Not trying to pry into this family's personal grief or make their story more public than they'd like. There is, after all, a child's right to privacy.

 

It seems like there'd be no shortage of support from this forum, the FB pages, the non-profits. But there should be a coordinated, focused effort. This could really be a rallying point. But not knowing hospital politics, what makes administrators pay attention (aside from news stories, which seems to be underway)?

 

Second, if appropriate, has anyone closer to the situation found out what sort of support this family needs? Is there a way to send them messages of support? Is there a need to create a donation site for legal defense? (what was the site that was used to raise money for that bullied bus monitor in NY?)

 

It seems like this is a role for one of the non-profits to coordinate - whether it be one of the FB groups, Beth, IOCDF - we are the soldiers. Tell us where to march. Please let us know what your contacts have to say. thanks!

 

I'm hard-pressed at the moment to know exactly what to do next. I know that Beth is representing the parents and has a ton of resources at her disposal. Knowing for-profit medical institutions, it will be the negative press that will have the greatest impact on them, I expect, and that is underway even as we speak. I find it ironic that one city can be the home of both an institution that's so violently opposed to PANDAS/PANS and ones (Harvard Medical School and Mass. General) that not just accept but, on some level, embrace the whole concept!

 

As I said, DH has written Jenike earlier today, and hopefully we'll hear back from him. For pete's sake . .. Jenike could just walk down the street and into the heart of the situation if he feels it's appropriate! Crossed fingers he feels strongly enough about PANDAS/PANS to intervene in some way. We'll see!

 

If anything else manifests, I'll be sure to let everyone know. Thanks, EAMom, for helping coordinate the press effort; I wish I had a BCH story to share, but short of that, if anyone in the media needs yet another appalled voice, feel free to count me in!

[MomWithOCDSon]

I've just sent emails to WCVB and WHDH in Boston, alerting them to the story in the event they haven't yet been contacted. I don't know if it would help if others jumped in and suggested the same story, but . . .

 

They're easy to find on-line:

 

WCVB

 

WHDH

[RNmom]

Here's a link to BCH's Facebook page: http://www.facebook.com/search/results.php?q=BCH&init=quick&tas=0.6435825145516316#!/BostonChildrensHospital?fref=ts

 

Lots of folks are commenting on this sitation.

 

Thanks for the link - it helped to make it remarkably easy to post on their site. I have to say it felt pretty good to speak up. I would encourage others to jump in.

[kos_mom]

I spoke to an activist friend of mine. Without knowing much about the particulars of the case, here are his recommendations:

 

1) Set up a Free Elizabeth Wray Facebook page. This would link to 2).

 

2) Make a UTube video that clearly sets forth the case and galvinizes people to support the cause. He strongly suggested that the producer be in his or her twenties or younger. It seems people over thirty do not have much of a knack for making successful UTube videos. My addition: the video should probably feature Beth and/or Elizabeth's parents. If they're not available maybe someone's older kid who knows how to do these things could make the case? Absolutely no experience here with this medium--I've barely watched one.

 

3) The reporter contact is good, as is the sending of emails to TV stations.

 

4) He also strongly advised getting Boston talk radio stations alerted--they are powerful in thier market and are always looking for good material. I'll try to look these up and will post so people can email.

 

5) Hold demonstrations in front of BCH with Free Elizabeth Wray as the basic theme with additional creative placards.

 

This is what he thought of off the top of his head. I'm sending him links about this and he'll ponder further.