<<Disclaimer: Verify this information before applying it to your situation.>>
 
As some of you may have noticed I have made several posts to the list on
ingredients in medicines and H.R.3200 etc.  I do not have celiac, but I have
a husband who does.  My background shapes some of my thinking .  I am a
school psychologist and an activist for children with special needs.  I have
served on state level advisory committees and have worked at one school
system for many years.  I am aware of the success of many low incidence
groups in using the legislative process to make sure that their members and
their children have their needs met.  I am saddened by the lack of effective
advocacy in the celiac community.  While it is one thing to be polite in a
given social situation it is another to sit back and not use the available
mechanism to advocate.  It is clear from the wide geeographic membership of
the list and the support groups that we have representatives from every
state.  We should be providing information about celiac to every single
representative and senator.  We should let our representatives know that we
watch their votes on legislation and ask them to sponsor legislation for us.
For those that are in groups under 501.c3- you should be aware that you can
spend some of your funds on lobbying and that lobbying is specifically
defined, and much advocacy is not considered lobbying in terms of the law.
 
We should make use of every regulatory entitlement available to us.  From the
allergy network posts I have read that they demand that school lunches that
meet their children's needs be made available- and that school nurses educate
the rest of the children about the problem.  The community which is concerned
about autism, incidence approx.  4 in 1,0000, is using current law well.
 
Are we using the Americans with didabilities act?  Are we reporting adverse
reactions to the FDA?  Only 1 in 10,000 people have reactions to a certain
yellow color yet labels must repond to their needs.
 
We must also become familiar with the mechanisms for funding research
through the National Institutes of Health. They have hearings every year
to establish funding priorities. Are we presenting at these hearings?
 
I have seen how effective advocacy can work. Let's make it work for
celiacs!
 
There is a Bill out there, H.R.  3200.  Let your representatives know that
you are concerned that you want to be sure it doesn't weaken the already weak
labeling laws.  Use this as an opportunity to send them information on
celiac.
 
Irma DeBruyn
Massachusetts