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Forum
-> Miscellaneous
elisecohen
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Thu, May 18 2006, 9:51 am
Two of my sons have a life-threatening GI disease (eosinophilic enteropathy) which affects many other Jewish children too, though it is rare and very unknown to most people. We've done various fund-raisers for the 2 organizations other moms have founded to fund research and awareness, like appeals at Pesach time ("Sachy won't be eating matzoh this year at the seder...") and lemonade stands, but we really need something big to take off, like the Komen walk-a-thons, Team in Training, Lance Armstrong Livestrong bands, etc.
Please help me come up with something brilliant! We've been informed that NIH won't be funding any studies in this disease this year. Trials of one drug to help one form of the disease have just begun in Cincinnati, but that only will treat a small subset of patients, if it even proves effective and safe. I would love to see my seven year old be able to eat. When he was in nursery school and they made a model kotel and put kvittelach in, his said, "Please let me be able to eat everything, even rice cakes." To him being able to eat rice cakes would mean the world.
Any ideas welcomed. Please post or IM me if your brain works in this way and comes up with something!
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happy2beme
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Thu, May 18 2006, 11:20 am
Sorry, I didn't think of anything yet, just wanted to let you know that I'm thinking & I hope iy"h he has a refuah shileimah bkarov
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hisorerus
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Thu, May 18 2006, 11:48 am
Brainstorming:
- Packages of whatever is the closest substance to bread he can eat, with information on it, sold in a supermarket display
- Nationwide cooking contest using none of the ingredients he can't eat
- Branded paper plates sold as a fundraiser, with facts and figures on each plate
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elisecohen
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Thu, May 18 2006, 1:11 pm
The plates idea isn't a bad one--anyone have any contacts?
Foods just don't work, as most of these kids can't eat any foods except medical formula; in fact, many can't even tolerate that and are on TPN (central IV line for nutrition). My 7 year old has medical formula, salt, sugar, and corn (hooray--popcorn and corn chips) as his foods; we're lucky with the corn.
But PLEASE everyone, keep the ideas coming.
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carrot
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Thu, May 18 2006, 3:14 pm
I don't know how large scale this is, and maybe it's a little crazy (or some might say tasteless) but how about an "eatathon"? - of some healthy food or maybe water. it is not easy to drink that many glasses of water, or there can be a top limit - and it would be really good for everyone who participates. even if it is a food that he cannot eat - that will make people realize all the more how tough life is for a kid like this. ok, maybe a little off the wall but I guess this is called brainstorming.
I like the plate idea.
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newu
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Thu, May 18 2006, 4:10 pm
what about getting a bunch of friends to bake for a melave malka? If everyone helps make things and maybe some bakeries or places donate some food and all you ask for are donations maybe that way you can raise some money and it's a fun way to socialize. Also, maybe you can get people to donate brand new things that they have at home sitting in closets and auction those things?? Good luck!
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Raisin
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Thu, May 18 2006, 4:12 pm
Are you trying to raise money, or raise awareness?
How about a chinese auction by post? (It must work, people keep doing them!!!)
A sponsered hike, swim, learnathon. People have a to raise an amount of money to join in.
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elisecohen
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Thu, May 18 2006, 5:03 pm
We're looking to raise money, on a national level. It's not that I need $ for my kids' medical supplies, it's that we need hundreds of thousands of dollars and more to fund research. Kids die from this. There's a Jewish girl who is about 11 years old and has had this from birth who has just had a major crisis and has been inpatient for almost a month now, moved from her local hospital to Cincinnati (the world center of EE research) by airlift, newly on TPN after being on a gtube since infancy, and still in crisis. There are my boys; friends' 2 sons also who both have it; and a family I know who had made aliyah but had to return to the US because 3 of their children have it and they needed the care available here. I know of other Jewish children with the disease too, this is just a sampling. This is not an exclusively Jewish disease, but these are Jewish children who are suffering.
If awareness is increased, as it inevitably will be if we succeed in a big fundraising effort, all the better.
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hisorerus
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Thu, May 18 2006, 5:26 pm
"G-Tube" educational inflatable inner tubes given out as fundraising prizes in schools, or sold door to door as pool/beach toys?
"G-Tube" straws- extra-large straws sold with Cokes and coffees in coffee shops, restaurants, and amusement park concession stands as a fundraiser? I.e. "Would you like a G-Tube straw for that (extra 25 cents)?"
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shoy18
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Thu, May 18 2006, 6:34 pm
what about paper placemats, I see advertisements on them all the time. They put them on the plastic tray they give fast food on. with words like "children all over the world cant enjoy "X" due to do Gi disease"
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red sea
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Thu, May 18 2006, 7:17 pm
What about the supermarkets & large retailers when they ask you to buy a little mini paper thing for an extra dollar to support xy & z, they have you sign your name and hang them up, they seem to raise large amounts of money. If you can schedule a few weeks that don't overlap the existing ones, "This week when you buy your food will you donate an extra $ to fund research for children who cannot eat any food?"
Or even with a twist if you could design a specific, what are those bracelets called with like knotted threads, a specific design and color scheme and market it as kids supporting kids selling at all the summer hot spots. Maybe a set goal, like "This summer be part of it. Help us raise $specific amount$ so Dr so and so can try to help these children (photo) be able to taste their first bite of food".
gl, I hope you raise a lot of money.
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Tefila
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Thu, May 18 2006, 8:01 pm
Quote: | what about paper placemats, I see advertisements on them all the time. They put them on the plastic tray they give fast food on. with words like "children all over the world cant enjoy "X" due to do Gi disease" |
I like that idea very much
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Meema2Kids
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Fri, May 19 2006, 8:08 am
A few ideas to raise a lot of money:
1. Find a benefactor or two who can personally donate a lot of money.
2. Ask for donations via postcards, mailings, phone, whatever, and find a benefactor who will match whatever you raise.
3. Hold a benefit concert. Find a Jewish performer who wil donate his performance or give a discount, also get discounts or no cost venue, try to get publicity, programs, etc. donated. Costs of tickets will go toward your cause. Also people can sponsor, you can list in a program. This takes a lot of time and organization.
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queen
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Tue, May 23 2006, 8:36 am
just to let you know I'm thinking elise!
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