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#11329 - 03/20/06 07:15 AM Anyone in the northern California area?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I've been talking with Les, and he had the WONDERFUL idea of trying to get a support group together through Stanford University for people and parents of kids with ichthyosis. I've talked to a couple doctors at Stanford, and have an appointment with our regular dermatologist this coming Thursday to talk more about it. There's also a wonderful woman who Les talks very highly about, who's the mother of a child with EB, and is very supportive (but I can't for the life of me remember her name!!) who might be willing to help too.

I'm just trying to get a general idea of how many people would be willing to come to a support meeting once a month, or every other month. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I know it would be really helpful to me, and I'd hope that other people would want to participate too! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Also posting this in the General Discussion. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
_________________________
Courtney
Mom to Julia

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#11330 - 03/30/06 05:44 PM Re: Anyone in the northern California area?
dpatock Offline
Member

Registered: 01/31/05
Posts: 44
Loc: Sacramento, CA
Hi Cshell,

I live in Sacramento, and would be very interested in getting together! My daughter is 2 years old, with lamellar ichthyosis. Let me know if something gets planned, or if I can help in any way.
thanks, Darcie

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#11331 - 03/31/06 07:06 AM Re: Anyone in the northern California area?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Awesome! [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I'll definately let you know. It's still very much in the planning stage right now, but I'm supposed to talk to a few different docs/heads of departments this coming week (first week of April), so I'll post when I get some more info.
_________________________
Courtney
Mom to Julia

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