<<Disclaimer:  Verify this information before applying it to your situation.>>
 
Seems to me that as long as we are perceived to be a small medical
minority, we are not going to get any consideration from Congress.  I'm
afraid the economic interests of the majority outweigh the needs of the
minority.  And Congress represents the people.  If the general population
doesn't know or care about our situation, don't expect your elected
representative to be any different.
 
Being publicly visible has the added advantage of "scooping up" more
undiagnosed celiacs.  I just spoke yesterday with another woman who is
willing to consider a gluten-free diet.  She's been miserable for years
with bowel problems and heartburn, and was told by a local gastro that
it's only IBS.  Her brother died of complications from diabetes.
 
And certainly, a diagnosed celiac is far healthier than an undiagnosed
celiac.  Just from the reduction in physical stress.
 
Here are things we can do:
 
In the past, I've posted addreses for NPR, the CBC, and 2 of the major
networks.  These addresses can be gotten quite easily by calling your
local network affiliate.  Take the time to write a letter to the features
department.   Tell them how hard it was to get a diagnosis.  Let them
know how well you are coping.  Figure it to be human interest stuff.
 
If your group is established, have you ever considered listing in the
blue pages (community services section) of your phone book?  Call the
publisher of your directory & ask how you can get listed;  to find the
publisher, look under advertisers - directory & guide in the yellow pages.
 
Finally, as I've gotten more active, and did the newspaper interview &
talked with other celiacs I recently met in my area, I noticed they
shopped at the local natural foods co-op.  If there is one in your
neighborhood, Have you ever thought of posting a sign?  Maybe something
about dietary support.  If you don't feel comfortable about posting your
phone number, maybe the people reading the message can leave their
contact info with the manager.  It's worth asking about.
 
Reading the Sprue-nik News & the postings incorporated from subjects
discussed on this list gave me an idea.  Perhaps I can do something like
a fact sheet on CD & DH,  run off a  few copies & leave them at the co-op.
 
If we can educate the public, I think we'll get more consideration  and
support from our elected representatives. Our condition will be familiar
to them.  Who knows?  We might pick up a few more celiacs from Congress
(& the White House).
 
Bec