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Crohn's Charities? Other than CCFA?

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Posted 10/2/2007 7:51 PM (GMT 0)
Hi everyone,

Do you know of a nonprofit that benefits those with IBD?  I'm looking for an alternative to CCFA for making a big donation.

Thanks!

Carly

Posted 10/2/2007 9:46 PM (GMT 0)
I think healingwell takes donations :) Depending on how big your donation is maybe you could try to be put in contact w/ someone w/ IBD that can't afford a needed surgery or medication.
Posted 10/2/2007 10:37 PM (GMT 0)
You could also earmark a donation to CCFA for a specific purpose, for instance to be used only for research.

Dr. Hermon-Taylor in England, who is working on a Crohn's vaccine, is also accepting donations.

Posted 10/3/2007 2:11 AM (GMT 0)
I've seen references here about CCFA. What are the politics? Is CCFA not using it's funds in a good way?
Posted 10/3/2007 3:30 AM (GMT 0)
Oy vey... if you do a search Im sure you will find our many debates but I will try to sum it up for you... (these are estimates from memory) 20% goes to research, 70% to patient education and support, 10% to costs.... The debate is whether they are donating enough towards research. Some feel that since they are supported by drug companies they are more likely to put the money into support and less likely to put it towards a cure. However, almost all of the research break throughs have had the CCFA backing it. Granted, most of these break throughs were found in looking for a new drug. But every new breakthrough is a step closer to a cure.
Posted 10/3/2007 2:53 PM (GMT 0)
Actually, CCFA is rated 3rd in the country in terms of research percentage of expense.

CCFA, unlike other health foundations, is dedicated to finding a cure thru research, but because they are supporting people with a chronic disease, they also understand the importance of offering support and education services. Other wonderful organizations like JDRF put all money towards research, because that is their entire mission: RESEARCH. CCFA is commtied to research, education/support and better treatment options.

CCFA's actual Mission statement is:  To cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these disease.

Posted 10/3/2007 8:06 PM (GMT 0)
The reason I posted the question is this - I've supported CCFA in three cities I've lived in since I was diagnosed. However, since I moved to my current city, I've had nothing but trouble with the current chapter. They would not help me when I asked for doctor recommendations, and though they promote their support group online, it's actually been defunct for more than 5 years. I offered to help start a support group and so they put me in touch with other people my age, but when we actually started the group they refused to support us in any way. The whole thing was so negative.

But - it's the only charity I know of, so when I came across an opportunity to raise several thousand for them, I called to ask if I could give out flyers at the next CCFA event. They basically told be to suck it.

I'm so frustrated that I don't know what to do - they won't help me, and they won't take my money. You may read this and think, "this person's nuts, it must be her problem and not theirs" but truthfully every person I've met with CD or UC in this city has had a similar experience, AND my doctor told me on my first visit to stay far away from them.

It is so, so sad.
Posted 10/3/2007 8:55 PM (GMT 0)
Sorry you've had such a bad experience! Seriously, that sucks. Would you eMail which state you live in? No worries if you don't wanna. I might could help ya. Thanks!
Posted 10/3/2007 9:03 PM (GMT 0)
jdiane - sure, what's your email?
Posted 10/3/2007 9:05 PM (GMT 0)

* Edited to remove the poster's e-mail address. It is unwise to post your e-mail address in a public forum thread such as this. If you look to the left of this post, under the poster's name are some icons, one of which is an envelope. Click on the envelope and you will be able to send an e-mail directly to that person. - C2

**To others, if you want forum members to be able to contact you via e-mail you should list your e-mail address in your Control Panel rather than in these public forum threads. This is for your safety and privacy. - C2

Post Edited By Moderator (CrohnieToo) : 10/3/2007 5:19:55 PM (GMT-6)

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