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#13864 - 04/17/07 06:42 PM Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Hi!
Last fall, during Ich. Awareness week, I had desperately wanted to plan some type of F.I.R.S.T. fundraiser, but, life is crazy, and I really can't wisely attempt this on my own. So, what I wanna know is, are any of you interested in getting together sometime this summer (either July or August) and trying to plan an event (to take place during Icth Awareness Week) together?? I am feeling a bit apprehensive about this (because we are really busy all the time, and it's a big commitment; it's not like I don't already have a crazy life [img]http://www.ichthyosis.com/ubb/wink.gif[/img]), but I am also really feeling a real burden and have for a while. So, anyone feel the same and wanting to share the burden? Let me know! You can email me or just post here.



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*Laura
Mom to: Joshua (7yrs) and Matthew (3yrs) both affected with x-linked ichthyosis
_________________________
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13865 - 04/18/07 02:00 AM Re: Chicago-Area Parents
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
LauraAnn

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#13866 - 04/18/07 02:00 AM Re: Chicago-Area Parents
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
LauraAnn

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#13867 - 04/18/07 02:02 AM Re: Chicago-Area Parents
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
LauraAnn
That sounds great. I would of been interested in doing something with ya, but we just moved in March from Algonquin, IL to Florida. I thought I saw someone post here a couple of times that was in McHenry. Maybe they will.
GOOD lUCK!!!

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#13868 - 04/18/07 02:06 PM Re: Chicago-Area Parents
melissa Offline
Member

Registered: 07/09/03
Posts: 14
Loc: janesville WI USA
I would love too also. I live in Janesville Wisconsin!
_________________________
Melissa

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#13869 - 04/18/07 02:38 PM Re: Chicago-Area Parents
Beth Engerman Offline
Member

Registered: 08/23/00
Posts: 106
Loc: Indianapolis, IN USA
I will come up from Indianapolis. I love any reasone to come the Chicago!

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"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela
_________________________
"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela

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#13870 - 04/18/07 11:35 PM Re: Chicago-Area Parents
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I'm in Naperville, and I know there's a family in Mokena here. I also met a lady in Aurora.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#13871 - 05/07/07 03:32 AM Re: Chicago-Area Parents
ChicagoLaura Offline
Member

Registered: 05/01/07
Posts: 91
Loc: Chicago
I am new to this site and would be interested in meeting some other parents in my area. I live on the Southside of Chicago and have a 15 month old daughter with CIE.

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#13872 - 05/13/07 02:18 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Quote:
Originally posted by ChicagoLaura:
I am new to this site and would be interested in meeting some other parents in my area. I live on the Southside of Chicago and have a 15 month old daughter with CIE.



Email me, I'm on the north side (uptown).
_________________________
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13873 - 05/13/07 02:21 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
To all those who have replied: I will email you sometime in July and we can all come up with a good time to get together to discuss this? Does this sound good?
Anyone else interested??
_________________________
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13874 - 05/14/07 05:50 PM Re: Chicago-Area Parents
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
I am near Detroit, but I could try to come to Chicago to help- Dawnn (1 yr old daughter with CIE)

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#13875 - 05/19/07 01:16 AM Re: Chicago-Area Parents
rodkarbrown Offline
Member

Registered: 05/23/05
Posts: 148
Loc: Rochelle IL USA
We are in Rochelle IL (about 70 miles West of Chicago) and we would love to!!

Keep me posted.
Karla mom to Kaylee with NS
_________________________
Karla Mom to twin girls from Haiti, Kaylee (Netherton Syndrome) Kylee not affected.

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#13876 - 05/29/07 08:13 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Okay, as expected summer is nuts, here are the dates I will be in town and able to meet this summer: Between July 10th and 20th; and between August 5th and 19th. I would really love any of you (not just moms and dads!) to join up with us; I am thinking we get together, enjoy eachother's company [img]http://www.ichthyosis.com/ubb/smile.gif[/img]; brainstorm; and delegate responsibilities for whatever we come up with. Please, please be thinking about what would be a good fundraiser for us to pull off. I am an amateur and completely intimidated by this, but really excited to do something (and meet all of you). So, let me know if any more of you are interested, what are workable dates, and where we should meet, etc.
Take care all, hope we can get this worked out.
_________________________
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13877 - 05/29/07 08:16 PM Re: Chicago-Area Parents
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I would love to do the same thing in the Minneapolis area. If you don't mind sharing your ideas with me I may be able to use them here.

What is Ich Awareness week? This is the FIRST I've heard of it (pun intended).
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#13878 - 05/29/07 09:50 PM Re: Chicago-Area Parents
ChicagoLaura Offline
Member

Registered: 05/01/07
Posts: 91
Loc: Chicago
I would like to help, but will be in and out of town this summer, as I am a teacher and like to take advantage of my summers off.
What type of fundraiser are you thinking of? A dinner?

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#13879 - 05/30/07 01:58 AM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Quote:
Originally posted by ChicagoLaura:
I would like to help, but will be in and out of town this summer, as I am a teacher and like to take advantage of my summers off.
What type of fundraiser are you thinking of? A dinner?


Not sure WHAT yet, but hoping to do the fundraiser during ich awareness week....but flexible (fall), if you want to be involved, and can't meet this summer, that's okay, we can still keep you informed and you can let us know how / if you can help out. Sound good?
_________________________
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13880 - 05/30/07 05:00 PM Re: Chicago-Area Parents
ChicagoLaura Offline
Member

Registered: 05/01/07
Posts: 91
Loc: Chicago
I will check the board and my email whenever we are around. I would like to help if I can.

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#13881 - 07/08/07 04:10 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Looks like I won't be able to plan a meeting until August, after the 5th.
So, let me know when it will work for all of you, send me your dates/days/times, etc. and we'll try to coordinate.
Hope this works! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]


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*Laura
Mom to: Joshua (8yrs) and Matthew (3yrs) both affected with x-linked ichthyosis
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13882 - 07/08/07 11:45 PM Re: Chicago-Area Parents
ChicagoLaura Offline
Member

Registered: 05/01/07
Posts: 91
Loc: Chicago
I am available during the day until August 13, when I start working. Then I am available after 4:30 except on Tuesdays. My weekend schdeule varies.

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#13883 - 08/09/07 03:00 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Okay, now's the time to let me know what days/times/dates are good for everyone, I am hoping this works out, you can email me or post replys here.
Looking forward to hearing from you.

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*Laura
Mom to: Joshua (8yrs) and Matthew (3yrs) both affected with x-linked ichthyosis
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13884 - 08/09/07 10:33 PM Re: Chicago-Area Parents
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I'll be gone Aug 11-25th, otherwise I'm free, particularly Fridays and weekends once school starts.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#13885 - 08/10/07 05:56 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
*bump*
_________________________
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13886 - 08/11/07 05:35 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
anyone else?
I'm trying to email to all the replys on here today, you can all email me too....

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*Laura
Mom to: Joshua (8yrs) and Matthew (3yrs) both affected with x-linked ichthyosis
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13887 - 08/11/07 07:13 PM Re: Chicago-Area Parents
rodkarbrown Offline
Member

Registered: 05/23/05
Posts: 148
Loc: Rochelle IL USA
Keep me posted too!

Karla
_________________________
Karla Mom to twin girls from Haiti, Kaylee (Netherton Syndrome) Kylee not affected.

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#13888 - 08/12/07 05:39 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Quote:
Originally posted by aylasmom:
I am near Detroit, but I could try to come to Chicago to help- Dawnn (1 yr old daughter with CIE)


Hi, Dawnn, I tried to email you, but it didn't work for some reason, trying to coordinate a meeting time that will work for everyone, please let me know if you are able, email me, okay?
_________________________
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13889 - 08/13/07 01:54 PM Re: Chicago-Area Parents
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Just to let you know, Dawnn has a little problem with her email/internet at the moment.
Lisa
_________________________

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#13890 - 08/13/07 03:26 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Quote:
Originally posted by Angel24755:
Just to let you know, Dawnn has a little problem with her email/internet at the moment.
Lisa

Okay, thanks for letting me know, I'll keep checking.



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*Laura
Mom to: Joshua (8yrs) and Matthew (3yrs) both affected with x-linked ichthyosis
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13891 - 08/27/07 11:17 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Ummm, hi again, all, I am just posting here to let everyone who has replied on this thread know that I had sent you each an email a couple of weeks ago, haven't heard from any of you and mentioning it here, in case your email programs considered it spam and you never received it or something. If you never got an email from me, please email me and let me know. Thanks.


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*Laura
Mom to: Joshua (8yrs) and Matthew (3yrs) both affected with x-linked ichthyosis

[This message has been edited by LauraAnn (edited August 27, 2007).]
_________________________
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13892 - 08/29/07 03:40 PM Re: Chicago-Area Parents
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
*bump* (sorry for the bump, but I know people don't necessarily come here everyday, I hope no one's offended)...


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*Laura
Mom to: Joshua (8yrs) and Matthew (3yrs) both affected with x-linked ichthyosis
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#13893 - 08/29/07 04:20 PM Re: Chicago-Area Parents
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I sent you an email.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#13894 - 10/10/07 03:32 PM Re: Chicago-Area Parents
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Laura, I need your phone number. Email me, please.

I talked to my preschool yesterday, and they are willing to do the idea that I mentioned. Before I say what it is, I wanted to talk to you about it and see if we can get more schools/churches/scout troops involved.

Jennifer
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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