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Hi Patti,

Just curious....how were you planning on using the pictures? My preference

would be for the photos to not be avaialable at the home page, but rather have a

montage available at a sublink. I'm picturing a montage, and next to each

picture, initials and age, for example, " P.F. 3 yrs, 6 months " .

Also, one way to handle this would be to simply download the pictures off of the

RSS listserve site, if parents give their permission. This way, people can just

point you to the files.

Katy

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Pattie,

I would probably be able to give you permission to use pictures of Max

(there are a few of them in the files); however, I would like to have more

information on how you would use them. Maybe if you could be more specific

then you would have more who are willing to give their permission, too.

Jodi

web site

> I would really like to use some pictures of our kids on the web

> site..please let me know if you have a picture of your kids that you

> would let me use.

>

> pattie

>

>

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>

>

>

>

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Pattie, my grandson's pictures are in the RSS files. If there is some way

to get them from there you are welcome to select one for your site. By the

way, to all that went to the convention, my daughter's funding did not come

through until after the day she wanted to be there. Needless to say, we

will definitely be prepared for next year, God willing. She was heartbroken

over this. She wanted Dr. H. to see Trey and most of all to meet other

parents. Best to all,

>From: pattie@...

>Reply-To: RSS-Supportegroups

>To: RSS-Supportegroups

>Subject: web site

>Date: Tue, 08 Aug 2000 14:26:22 -0000

>

>I would really like to use some pictures of our kids on the web

>site..please let me know if you have a picture of your kids that you

>would let me use.

>

>pattie

>

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Pattie -

Thank you for all your hard work, and your husband's. I will try and review the

content over the next week. I will also try and find any photos of our daughter

that are " stereotypical RSS " when she was younger.

Photos are so important!!! When a doctor first mentioned RSS, my husband and I

went to a medical library. I can not tell you the relief and amazement we felt

when we opened up an article on RSS and saw a photo of a little girl that looked

exactly like !!! But I do believe that our web page's photos should NOT

have names, but only initials, age and weight/height.

Also, is there going to be some buried thing (can't remember what you guys

called it), so that a parent searching on " Silver " would still be sent

to our site even though it is named " RSSKids " ? That is very important. We

never knew it was called " RSS " until at least a year after our diagnosis.

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