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Mystery is solved.  The facts:

Yesterday I called my representative Republican Trent Franks to ask him why he voted "no" on HR 810

I didn't get to speak to him, but to one of his aides who asked me if I  knew about PAN.

I was really, really mad and yelled or I should say squawked at  him
Does this sound like me?

He proceeded to tell me that "Leary" at PAN told them there were better alternatives, giving the impression that PAN opposed this bill.  By this time I was having chest pains and had to hang up.

I emailed Franks asking for the name of this person at PAN.  So far there has been no reply.

I got my calm and nerve back today and called the office again.  I was told by another aide that it was Michael O'Leary at PAN and that they had discussed the issue with him, but (with my prompting) opposed the bill on moral grounds.

Now it is one thing to oppose something on moral grounds, but quite another to misrepresent the views of a patient's advocacy group. which his office did.  My voice is so bad I probably sounded  like a drunk or the village idiot and I think this young whipper snapper mis-underestimated (Bush language) my intelligence.

I do think PAN and Michael O'Leary should know about this.  It is so difficult to fight both this disease and these liars.

www.house.gov/franks or phone 202-225-4576 to contact Franks.  Don't know how to get ahold of PAN but have emailed Christy.

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Ray