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Re: Advocay Summit

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geez, still sobbing cuz I wanted to be at the summit. Dang AF!!! Anyway those

going, have a blast. If you are a first timer , you will learn so

much.....Alia, you will be very busy!!! Have fun guys!

Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch video on

AOL Living.<BR>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)</HTML>

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and geez postage wouldnt be so bad..dang anyone know how I can gain a few

pounds??? Since surgery last year I cant gain a pound. I was at 96, now at 103

and docs want me at 110...it aint as easy as ya think....lol

Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch video on

AOL Living.<BR>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)</HTML>

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  • 11 months later...

Hi Alia - I am not familiar with the Advocacy Summit. What is it

and where is it?

>

> Hello Group -

>

> I am not sure if there has been a post or not, but who is going to

> the Advocacy Summit? Caroline and I are going - it will be our

first

> one. We are very excited!!!

>

> For all you " old timers " , I am sorry we have been so absent.

Welcome

> to all the newbies - there are so many wonderful people here!!!!

>

> Here's a quick update on Caroline...... She just turned 7 (sniff

> sniff), I can't believe we have been fighting this disease for 6

> years! Ugh. She is been on Humira for over a year and it seems to

be

> working fairly well, although lately she has had increase joint

pain

> and swelling as well as some fingers getting " stuck " . Her Uveitis

has

> been persistently stubborn. We just had kenalog injections done

the

> week before christmas, her fourth one's in 2008. We see her eye

doc

> and her eyes post injection are down to trace cells. Yea!! Her

right

> cataract is continuing to grow at a steady, but slow pace, and her

> left cataract remains largely unchanged. Her pressure is still

> hovering slight about normal, but we are happy with that for

now.....

>

> I hope to catch up with many of you again....

>

> Alia and Caroline, age 7, poly and uveitis

>

> Alan (DH), Evan (3), Greer (16 months)

>

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Hi Alia! Welcome back! Glad to hear your update. It is good to hear the

Humira seems to be working, and I sure hope those eyes improve. Been

wondering how things have been with you all - it has been a while. How

are the little ones doing? Great to " hear " from you, Michele ( 21,

spondy)

________________________________

From: [mailto: ] On

Behalf Of Alia Pranke

Sent: Friday, February 13, 2009 9:01 AM

Subject: Advocay Summit

Hello Group -

I am not sure if there has been a post or not, but who is going to

the Advocacy Summit? Caroline and I are going - it will be our first

one. We are very excited!!!

For all you " old timers " , I am sorry we have been so absent. Welcome

to all the newbies - there are so many wonderful people here!!!!

Here's a quick update on Caroline...... She just turned 7 (sniff

sniff), I can't believe we have been fighting this disease for 6

years! Ugh. She is been on Humira for over a year and it seems to be

working fairly well, although lately she has had increase joint pain

and swelling as well as some fingers getting " stuck " . Her Uveitis has

been persistently stubborn. We just had kenalog injections done the

week before christmas, her fourth one's in 2008. We see her eye doc

and her eyes post injection are down to trace cells. Yea!! Her right

cataract is continuing to grow at a steady, but slow pace, and her

left cataract remains largely unchanged. Her pressure is still

hovering slight about normal, but we are happy with that for now.....

I hope to catch up with many of you again....

Alia and Caroline, age 7, poly and uveitis

Alan (DH), Evan (3), Greer (16 months)

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unfortunately I will not be at the Summit this year but you will love it Alia!

It is educational, rewarding and really lots of fun. I miss going to the Summit

so much. My Congressman signed on to the APCCA as an original co-sponsor a few

weeks ago! Have lots of fun and I know Caroline will do a fabuous job!

Donna

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