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#22174 - 07/18/06 10:53 PM Re: Anything we can do
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Quote:
Originally posted by shandra:
I have an idea and I'm not too sure how everyone would feel abou this, but if you think it is dumb please tell me. What do you all think about a Quilt that has a picture of all of the kids that have Ichthyosis that are on this BB. Hang it up at the next conference and have it as a raffle(or even an auction) with the proceeds going to first. Or soemthing like that. All of could pitch in monies for what it would cost of material etc to have done?

Please if this sounds real dumb or crazy let me know.

Shandra


No idea is ever a dumb idea Shandra. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
However, I don't really know how I would feel about my kids pictures on a quilt though. My kids pictures are very personal to me. I don't even really intend on leaving them on the BB...just long enough for everyone here to see them and then I will probably remove them.
Lisa
_________________________

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#22175 - 07/19/06 12:41 AM Re: Anything we can do
Nana-1 Offline
Member

Registered: 07/10/06
Posts: 66
Loc: Cleveland, Ohio, USA
Shandra - I think it is a wonderful idea. My little Adam is constantly talking about his friends (Haley, Ben, etc.) from the Conference - I think it would be a lovely keepsake and a beautiful memory for a child to have, always. Of course, the pictures should be strictly a voluntary option, but I for one think it's great and we are definitely in. Thank you for a great idea. Keep them coming. edie

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#22176 - 07/19/06 04:14 AM Re: Anything we can do
shandra Offline
Dakota's mom Lamellar
Member

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

I completley understand about your pictures being very personal and not wanting them out there. I am sure a lot of people feel that way. I probley should have put in my post that it would definatley have to be voluntarily.
Edie,if you think this is something that would be a go, I will post and see if there are actually some people that would also like to do this. I hope it does not offend anyone by asking.
Lisa the pictures are so adorable. They all always look so happy. As I have told you before your kids are beautiful.

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#22177 - 07/19/06 11:47 PM Re: Anything we can do
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Hey everyone! I think this section of the forum's a fantastic idea! My mother has been a continuous support for me (she was at the conference as well), as my daughter was born with Netherton's.

I love the quilt idea! I had an idea for a fundraiser, and this seems to be the place to talk about it lol I was thinking, to petition different businesses - like hair salons, or tattoo shops (just thought of that one b/c I have a friend who owns one), and ask them to advertise that for maybe 2 hours on a Saturday, half of whatever they make would be donated to FIRST. Does that make any sense? I know Locks of Love does something similiar, except the salons donate hair instead of money.
_________________________
Courtney
Mom to Julia

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#22178 - 07/20/06 01:50 AM Re: Anything we can do
Nana-1 Offline
Member

Registered: 07/10/06
Posts: 66
Loc: Cleveland, Ohio, USA
Hi Again CShell - wonderful idea. I have some letters ready to go as well as a "Request for Donation" template, if you'd like I will e mail them to you - you can change paragraph #1 to fit your personal biography but the rest if quite general and can be used universally. Again - my contratulations and love - edie

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#22179 - 07/20/06 02:37 AM Re: Anything we can do
Nana-1 Offline
Member

Registered: 07/10/06
Posts: 66
Loc: Cleveland, Ohio, USA
Hi Angel - I am behind you 100%. We are a very special family united by very unique concers and a single ultimate goal. Yes, I do think we should proceed, on a voluntary basis of course. Any event, project, activity that is a fund raiser for the CURE, can and should be pursued. edie

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#22180 - 07/20/06 09:57 AM Re: Anything we can do
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I'd love for you to e-mail me the letter (Russian/English major over here, and still can't draft professional letter's for my life!), and I owe you a coffee! Remind me next conference lol wink
_________________________
Courtney
Mom to Julia

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#22181 - 07/20/06 09:46 PM Re: Anything we can do
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I just emailed my mom about this thread. Both of our parents are West Siders. My mom quilts for Project Linus and my MIL has a very good network of doctor friends and church friends that all know about her raising my husband with EHK. Now her grandsons both have it, too, so they know all about that. She does a lot of prayer vigils and stuff.
_________________________
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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#22182 - 07/21/06 06:16 PM Re: Anything we can do
LaurensGrandMa Offline
Junior Member

Registered: 07/16/06
Posts: 4
Loc: Corning, NY USA
Shannon Thank you, but isn't that what family is all about, support and loving, and that's what "GrandMa's are all about!! The quilt blocks are coming together a little at a time. Love you & See you soon Ma

Quote:
Originally posted by Laurensmom:
Hi all,

I can tell you first hand Lauren's g. ma can sew. She has made not one but two quilts (and bedding) for Lauren's nursery for us so that we can change with the seasons. We are so luckey to have such a wonderfully dedicated parent to support and love the three of us. Nana-1 you recruited a good one. Thanks Ma for everything and we will see you soon.

Love, Shannon

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#22183 - 07/23/06 03:44 PM Re: Anything we can do
Nana-1 Offline
Member

Registered: 07/10/06
Posts: 66
Loc: Cleveland, Ohio, USA
Hi Hearsay - I am so excited that you mom and MIL are joining our group. I would love to get together with them personally. Certainly the west side is very easily accessible for me and I am delighted that they have such a wonderful circle of friends and would love to meet them - we certainly can use all the help from here as well as from above. edie

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