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#13029 - 11/10/06 03:55 AM Increasing public awareness -- good or bad?
sideshowbob Offline
Member

Registered: 10/23/05
Posts: 209
Loc: Midwest, USA
Ok, here is the thing. I have this blog that, um, is kind of popular, and reaches a pretty wide audience. I've been on hiatus for a while, and am about to start writing again. So far, I haven't mentioned our daughter's ichthyosis, mainly out of respect for all of you. If I link to FIRST and this site, and start discussing what I go through with our daughter, then traffic to this forum will increase. That means total strangers with no connection to Ichthyosis lurking around, reading our forum, looking at pictures of our kids. It also means raising awareness of ichthyosis and presenting it in a positive light.

What are your thoughts on this?
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4 year old daughter with CIE

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#13030 - 11/10/06 02:40 PM Re: Increasing public awareness -- good or bad?
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
I also have a blog and when I am talking about Ichthyosis, I only link to FIRST. I think there is something to be said for awareness but I also think that privacy is important. That is the very reason that the pictures of my children never stay on this board very long. [img]http://www.ichthyosis.com/ubb/wink.gif[/img] Personally, I want people to know more about Ichthyosis but at the same time, I don't want them to know ALL about my life. That's why I only link to FIRST.
Lisa


[This message has been edited by Angel24755 (edited November 10, 2006).]
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#13031 - 11/10/06 03:05 PM Re: Increasing public awareness -- good or bad?
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Personally, linking to this BB I think isn't that great an idea, but linking to FIRST is a great idea. I linked to FIRST on a blog I have.
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13032 - 11/10/06 08:13 PM Re: Increasing public awareness -- good or bad?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I always give out the link to FIRST to people, not so much this BB because people can be educated without overstepping privacy limits. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
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Courtney
Mom to Julia

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#13033 - 11/10/06 08:27 PM Re: Increasing public awareness -- good or bad?
sideshowbob Offline
Member

Registered: 10/23/05
Posts: 209
Loc: Midwest, USA
This site is linked through the F.I.R.S.T. site. Also, if people google "ichthyosis", this is the first site that pops up. So my question is how concerned are you about people finding and reading this site?
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4 year old daughter with CIE

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#13034 - 11/10/06 08:50 PM Re: Increasing public awareness -- good or bad?
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
For the most part, if people are interested in learning about Ichthyosis and you give them the link to FIRST, they will browse around a bit and leave. They aren't going to be looking for a link to this BB. The FIRST site will answer most of their questions and they probably won't google Ichthyosis to learn anything more. However, if you link to this site, it is just handing the BB to them. Nothing on the internet is private...nothing...which is why I am very aware of what I post on here. (Also the reason that I remove my kids pictures after most people here have had a chance to see them.) However, I don't really want to make it easy for people to get here either. KWIM?
Lisa
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#13035 - 11/10/06 10:19 PM Re: Increasing public awareness -- good or bad?
Anonymous
Unregistered


WEll I really dont like the thought of strangers seeing my daughter pics. However I feel the people on here are not strangers technically..lol But I dont think total wierdos will be looking at a Ichthyosis website. Not saying they cant but dont think they will do research on something no 1 knows about.

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#13036 - 11/10/06 10:45 PM Re: Increasing public awareness -- good or bad?
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
We have had (me personally and others) some attacks, or emails sent that were obviously young teens etc. Or harrassing posts. I think that when you type in DRY SKIN it also sometimes shows this site,for even people that cannot spell ichthyosis. The moderators are usually great at getting them out of here fast. But your point is very valid, bits and piece of information can be put together to make a complete picture of your location and of course your childrens too. It is not necessarily the people that are posting that we have to worry about, as much as the lurkers. Maybe we as a group could leave names out, at least last names when possible, and disclose personal information only by phone or private email. I know that personally I talk to 12 people from this site on the phone or through email often, and probably another 10 through chat or instant messenger. The good news about this site is that it has helped so many more people than it has hurt, but I completely understand your position and concern sideshowbob. And like Angel said, I delete old posts and information that I realize says too much. I would not mind you linking this site to the blog, I think that the more people that understand ichthyosis, the better chance we all have to raise awareness and get more research, more donations and better medical care. Possibly a cure.

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#13037 - 11/11/06 12:53 AM Re: Increasing public awareness -- good or bad?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I'm an administrator on a military wives support website, and the military gives wives and sites like that guidelines called OPSEC. I'm going to post our particular OPSEC guidelines, ignore those that specifically have to do with the military, but they're some good tips for ANY public forum, not just this one. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]


OPSEC

Anyone who is affiliated with the military is required to ensure that their actions do not compromise the various operations of the military community. Information which is required for you or your spouse to perform assigned duties should not be shared or discussed where members who do not have a need to know can over hear that information.

Such breaches have the potential to compromise the success or security of military operations and personnel. Each member (or family member) must take precautions to avoid the intentional or UN-intentional disclosure of such information.

The following items are just a few tips to help you prevent an OPSEC violation.

* DO NOT give out names of personnel who are deploying

* DO NOT give out ANY personal information of any person INCLUDING yourself. This inlcudes last names, addresses, telephone numbers, etc on a public forum, website, etc

* DO NOT give out specific date of troop movements

* DO NOT give out number/location of aircrews or members deployed.

* DO NOT give out number/locations of equipment/aircraft/personnel.

* DO NOT give out senior officer locations.

* When someone tells you information that you do not need to know tell them they are violating OPSEC and you don't want to hear it.

* When you hear rumors about missions or operations of any kind that are supposed to be going on, don't repeat the rumor, just ignore it.

Remember it's our loved ones putting their lives on the line to defend the freedom and liberty we all enjoy, don't place them in greater danger by violating OPSEC.

If any newspaper approaches you or television media personnel please tell them you cannot speak to them and refer them to the military public affairs office.

The rules of OPSEC also apply to telephone conversation and e-mail transmissions. Please be VERY careful of the information you give through these channels. Even if it appears to be secure, you never know who may be monitoring you without your knowledge.

Our enemy took us by surprise and we will never be the same country again. In order to effectively bring the enemy to justice, we need to maintain the element of surprise. Every element of our operation is more sensitive than ever before. We must rededicate ourselves to our mission and our country to help ensure that what transpired on September 11th will not be repeated. Security must be incorporated into every aspect of our jobs. If we are not vigilant in protecting critical information, it will happen again. The future of America depends on changing the way we look at security. OPSEC can make the difference.

It is absolutely essential that it be understood and incorporated into everything we do.
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Courtney
Mom to Julia

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#13038 - 11/11/06 10:48 PM Re: Increasing public awareness -- good or bad?
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
You forgot to use a secure line when speaking. No cell phones or cordless phones. Scanners and the old MARS station (they tore that down) but scanners still pick up signals clear as day.

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