<<Disclaimer: Verify this information before applying it to your situation.>>

Last week I posted asking which celiac organizations
fund research.  

There is quite an interest in this topic, based on the
emails I received.  Several people said they had
either wanted to ask the question, or had asked some
groups without a reply.  

A couple folks said it was likely that the groups /
organizations wouldn't respond and that I shoudl
contact them directly.  Another couple offered that
only NFCA specifically says they are raising money for
research.  

Someone forwarded information about Gastrointestinal
Research Foundation (GIRF)in Chicago - affiliated with
University of Chicago -- and said it provides upstart
grants for research.

The Celiac Center at the University of Chicago said
that any money donated to the Center can be earmarked
for research.  They guarantee at least 85% of the
donation goes toward research. (Also said that they
thought the industry standard was 65%).

My initial email seemed to have confused some, as
several posts mentioned that NIH didn't have a lot of
excess funding to spread around, and celiac because
doesn't really kill people, at least not immediately,
is not a high priority.  They were happy with the
recent awareness effort by NIH. 

In case the groups did not see the listserv post, I
did follow advice of several posts and emailed groups
directly.  I contacted:  

   ACDA
   CSA
   CDF
   GIG
   NFCA
  
In my message I said their reply would be included in
the summary for the listserv. 

ACDA and GIG sent information.  NFCA sent an automated
reply that they got lots of emails, and someone would
get back to me.   

The ACDA post said that "the nation's leading
researchers and experts on celiac disease were
instrumental in establishing the ACDA" but it "does
not directly support, nor make contributions to fund
celiac research." 

GIG wrote that it and affiliate Branches, does provide
funds to research.  Walks and other fund raising
efforts are used to raise funds. The branches are able
to choose where to send the research money. 
They have given to almost all the research centers for
celiac disease in the US and to some independent
researchers are well.  They also state that funding
research wasn't a major part of their mission so it
isnt' listed on their 990. (I think the 990 is the
nonprofit tax return.) 

In the end, the response was as several predicted, and
did not give much information about whether celiac
groups are donating to help researchers at the centers
or elsewhere. 

If groups are going to ask us for donations for
research they can expect us to want to know who is
getting the money. I'd like to know what research they
think is promising.  Or maybe the researchers are
getting the money.  Hopefully, we'll hear from the
others.  

Jen



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