Hi Joan,
Those bills are certainly important, and should be supported. I agree with you that CCFA's attitude toward MC totally sucks. I'm not a big fan of the CCFA, because of their policy of ignoring MC, and frankly, I doubt that they will ever change that position, because they pursue the big bucks, and MC is a very small fish in a big pond, and never likely to become a large source of contributions to CCFA.
When it comes to writing Senators and Representatives, writing a letter or e-mail in your own words is always much better than using a form provided by some organization, (such as CCFA). Legislators are always much more likely to read, (and take to heart), correspondence from "real people", rather than just another form letter, or e-mail, promoted by some lobbying organization.
I especially take offense to the way that CCFA goes out of their way to shun MC. Note that they specifically spelled out the diseases that should be supported,
Crohn's disease and ulcerative colitis (collectively known as inflammatory bowel diseases) are chronic disorders of the gastrointestinal tract . . .
just to make sure that no one would make any "mistakes", and accidentally consider MC to be an IBD. They certainly didn't have to go to into that much detail, unless they had a reason, and that reason is to perpetuate the myth that Crohn's and UC are the only IBDs worth being concerned about.
Sending an email from the CCFA site is just one more way that CCFA as an organization can add another feather to it's cap as a lobbying advocate, since their website address will certainly be on the e-mail. Most legislators will probably just ignore most of those emails, when they see that they are all coming from the same source.
Everyone, please send your own e-mail or letter to your legislators. You can copy some of the text from the CCFA "form e-mails" if you want, but please send your e-mails directly to your legislators, from your own e-mail address, rather than from CCFA's address. Also, please point out that the IBD that you are suffering from is microscopic colitis.
IMO, CCFA is not our friend. They have made that very clear, right from the start, and they steadfastly refuse to change their policies/attitude toward MC. The wording in the phrase quoted above, for example, is just another slap in the face for MC.
You can look up the contact information for legislators for your state here, (just select your state from the drop-down list, and click on the "Search" button:
http://www.webslingerz.com/jhoffman/congress-email.html
Here's another site that offers another way to obtain contact information for legislators, (just click on your state, on the map):
http://www.visi.com/juan/congress/
And finally, here's an official U. S. government site where you can obtain that information.
http://www.usa.gov/Contact/Elected.shtml
Please note that for most legislator's websites, the contact information includes not only e-mail addresses, but also mailing addresses, physical office addresses, phone, and fax numbers, in case you would rather use those options for contacting senators and/or representatives.
Thanks for bringing these bills to our attention. I hope your friends' grandson is well received in DC.
Tex
Visit the Microscopic Colitis Foundation Website
Love and God Bless:
