Anything we can do

Posted by: Nana-1

Anything we can do - 07/12/06 01:24 AM

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
Posted by: Angel24755

Re: Anything we can do - 07/12/06 02:19 AM

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
Posted by: shandra

Re: Anything we can do - 07/12/06 04:53 AM

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.
Posted by: LaurensGrandMa

Re: Anything we can do - 07/16/06 08:10 PM

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
Posted by: Angel24755

Re: Anything we can do - 07/16/06 09:23 PM

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
Posted by: shandra

Re: Anything we can do - 07/16/06 10:18 PM

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
Posted by: LaurensGrandMa

Re: Anything we can do - 07/16/06 10:20 PM

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
Posted by: Angel24755

Re: Anything we can do - 07/16/06 11:28 PM

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
Posted by: Laurensmom

Re: Anything we can do - 07/18/06 05:08 PM

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
Posted by: shandra

Re: Anything we can do - 07/18/06 08:58 PM

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
Posted by: Angel24755

Re: Anything we can do - 07/18/06 10:53 PM

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
Posted by: Nana-1

Re: Anything we can do - 07/19/06 12:41 AM

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
Posted by: shandra

Re: Anything we can do - 07/19/06 04:14 AM

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.
Posted by: CShell

Re: Anything we can do - 07/19/06 11:47 PM

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.
Posted by: Nana-1

Re: Anything we can do - 07/20/06 01:50 AM

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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Posted by: Nana-1

Re: Anything we can do - 07/20/06 02:37 AM

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
Posted by: CShell

Re: Anything we can do - 07/20/06 09:57 AM

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
Posted by: Hearsay

Re: Anything we can do - 07/20/06 09:46 PM

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.
Posted by: LaurensGrandMa

Re: Anything we can do - 07/21/06 06:16 PM

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
Posted by: Nana-1

Re: Anything we can do - 07/23/06 03:44 PM

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
Posted by: Julia's Grandma

Re: Anything we can do - 07/26/06 01:30 AM

I just wanted to jump on here and say hi and introduce myself. I am, as you can see by my username, sweet Julia's grandmother and I am also CShell's mom. We met some of you at the convention, which we enjoyed very much.

As for fundraisers, we have been raising money for Courtney's friends' bike ride fundraiser for ichthyosis from NJ to Miami. I think we have so far raised close to $2,000. I am so proud of these 2 guys for doing this. Not only are they raising money, but they have had several newspaper articles printed about their fundraiser in order to raise awareness of ichthyosis. As for other fundraisers I can do, I am thinking, thinking. I will keep an eye on these boards for something that clicks with me. Great idea to do a board for the grandparents!

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Stephanie