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#22164 - 07/12/06 01:24 AM Anything we can do
Nana-1 Offline
Member

Registered: 07/10/06
Posts: 66
Loc: Cleveland, Ohio, USA
Let me start by saying how happy I am to see this section come to fruition. I, as a grandparent, welcome the opportunity for all of us to share our experiences here in this forum. I must take a moment and thank Laura for allowing us on this Board and invite everyone to actively participate.

I must apologize, I would have posted much sooner, however, we just returned from our vacation - post Conference in Atlanta and presently are continuing sun and fun in Cleveland and surrounding areas. Kelly and the children are here with me now, so I am in my full glory just being Nana.

We all have shared the experience of seeing how ichthyosis has affected the lives of our grandchildren, as well as that of our children who deal with it daily on exhausting, frustrating, and sometimes frightening levels. As grandparents, some of us geographically distanced, we cannot all be hands on, but we must do whatever we can to help and hopefully someday bring effective treatments and/or cure for this disease. I, for one, have been actively fundraising for the foundation. I organized a Neighborhood Garage Sale, seeking matching corporate funds, reached out to my dearest friends as well as my co-workers, actively seeking donations. If these small efforts could be duplicated and/or expanded, we could realize our goals that much sooner. I invite all grandmothers and grandfathers to share their experiences, tap their expertise and mount a campaign to fund raise on any level to find the cure for ichthyosis. I will gladly share all my efforts, including sample letters, posters, grassroots efforts, etc. Just think, if one family can raise $100, what 1800+ families could do ?? $180,000.00 - United we stand.....edie wohlgang

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#22165 - 07/12/06 02:19 AM Re: Anything we can do
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
The first grandparent post! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
The garage sale you had sounds wonderful...great idea!

I would love to see more grandparents join in. I have asked my mom to post but her internet has been down...maybe she will "show up" eventually LOL!
Lisa
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#22166 - 07/12/06 04:53 AM Re: Anything we can do
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Nana-1

It is so nice to have a Granparent post. I hope many others join in. I think it will be a really good learning section for all granparents.
I would love to see a sample letter, that I could pass on to my mother, you could email me it if you would not mind.

Hope to see more grandparents on here.

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#22167 - 07/16/06 08:10 PM Re: Anything we can do
LaurensGrandMa Offline
Junior Member

Registered: 07/16/06
Posts: 4
Loc: Corning, NY USA
So glad to be part of this Group, I am a sewer and I am planning on doing a "Butterfly" quilt to be raffled off upon completion with all proceeds going to FIRST. Nana 1 how did you approach companies for matching funds? Will be visiting N. Billerica soon to spend a couple weeks with My Lauren, and of course John and Shannon!! Nancy

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#22168 - 07/16/06 09:23 PM Re: Anything we can do
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Quote:
Originally posted by LaurensGrandMa:
So glad to be part of this Group, I am a sewer and I am planning on doing a "Butterfly" quilt to be raffled off upon completion with all proceeds going to FIRST. Nana 1 how did you approach companies for matching funds? Will be visiting N. Billerica soon to spend a couple weeks with My Lauren, and of course John and Shannon!! Nancy



Welcome to the grandparents board (so nice to see another grandma here)! The Butterfly quilt sounds wonderful. What a nice idea!!! Would you be willing to post some pictures of the quilt as you work on it?
Have fun on your trip to visit Lauren...I am sure you are looking forward to it!
Lisa
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#22169 - 07/16/06 10:18 PM Re: Anything we can do
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Welcome tot he BB. As Lisa said it is so nice to see another grandparent here. I think it would be great if you could share a picture of the quilt. What a great idea.
Shandra

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#22170 - 07/16/06 10:20 PM Re: Anything we can do
LaurensGrandMa Offline
Junior Member

Registered: 07/16/06
Posts: 4
Loc: Corning, NY USA
Lisa, would be more than happy to report my progress in pictures. The hardest part will be the selection of fabrics. But will keep in touch. Thank you for you Welcome! Nancy

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#22171 - 07/16/06 11:28 PM Re: Anything we can do
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Quote:
Originally posted by LaurensGrandMa:
Lisa, would be more than happy to report my progress in pictures. The hardest part will be the selection of fabrics. But will keep in touch. Thank you for you Welcome! Nancy


So happy you are willing to share the pictures of the quilt as you go!!! My daughters entire room is done in Butterflies (and Tinker Bell bedding)! Can't wait to see it from start to finish.
Lisa
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#22172 - 07/18/06 05:08 PM Re: Anything we can do
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
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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#22173 - 07/18/06 08:58 PM Re: Anything we can do
shandra Offline
Dakota's mom Lamellar
Member

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

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