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--- Agaw12577@... wrote:

> :) who is behind because her phone line was

> down all day yesterday!

> Ugh!

Oh, that's why you didn't give me a buzz ;o)!!!!!!

Sandie, Tae and Bo who got new clothes yesterday--thx

UPS guy :o)!!!!

=====

" The task ahead of us is never as great as the power behind us. "

" Faith is the daring of the soul to go farther than it can see. "

" Act as if it were impossible to fail. "

" There are no shortcuts to anyplace worth going. "

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  • 5 years later...

I wanted to bring up something that happened in the

rare gentic's group I belong too. A picture of a

young girl was taken from that web-site and used to

make a video for a shcool project about Triple X

syndrome. The video was then posted on YouTube. I

watched the video and did not find it offensive but it

was done without the young girls parents permission.

I do not have any picture of Isabella on this site so

I am not worried about her image being taken. I think

I must be illerate when it comes to this type of

thing. I did not even know you could take an image

from a web-site and use it. The parents in that group

are very up set and understandablly so. My question

is are our picture on the mds site protected so people

can not do this?

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IMDSA considers our member's privacy very important! That is why we screen each

person who wishes to enter our support group and often deny entry if we do not

have sufficiant information from the person. So...any photos on the support

group are only seen by others on this support group and are protected from

outside viewers.

The photo albulm that we have on our website is password protected and the

ONLY people who have access to that password are those on THIS support group.

When IMDSA uses a person's picture for advertising or promotional reasons, the

family must sign a consent form before the picture is used.

Currently, the only pictures that are viewable to others on the internet are

our Feature Child of the Month and our conference pictures (which were agreed

upon to use when people registered for the conference)

So...don't worry Sue. We do our very best to keep everything as private and

secure as possible. I am sure if someone tried hard enough, they could get the

pictures, but they would have to be very determined to do so and most are not

that eager to get pictures of kids with MDS.

Kristy

Sue wrote:

I wanted to bring up something that happened in the

rare gentic's group I belong too. A picture of a

young girl was taken from that web-site and used to

make a video for a shcool project about Triple X

syndrome. The video was then posted on YouTube. I

watched the video and did not find it offensive but it

was done without the young girls parents permission.

I do not have any picture of Isabella on this site so

I am not worried about her image being taken. I think

I must be illerate when it comes to this type of

thing. I did not even know you could take an image

from a web-site and use it. The parents in that group

are very up set and understandablly so. My question

is are our picture on the mds site protected so people

can not do this?

__________________________________________________________

Looking for last minute shopping deals?

Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

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