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4/15/98 Dear List Sibs, I'm sure it would be like preaching to the choir to call this group to even more action on Udall, but I did want to explain that I finally took the plunge. Oh, I had written before, but NEVER a letter like this. I used the sort of "shell" that PAN sent us the other day and interlaced "our" (Art's and mine) story, and each of us on this list HAS quite a story, I know, and then marched it over to the local offices of my U. S. Representative and my U. S. Senator. The responses of their staffs were wonderful in each case! One letter was delivered yesterday and one today. I actually got to the Congressman's office at around 4:30 yesterday afternoon and by 9:00 A.M. today, I had had 2 calls--one from a staffer assuring me that the Congressman would see it and that she had already faxed it to his legislative assistant (L. A., guys, I'm learning some new lingo here) in charge of health issues and, shortly after that, one from the L. A. herself. I had planned to go in there and say something really cool, but, as it turned out, I started to cry, much to my embarrassment, and could only ask them to read it. But even that didn't seem to hurt one bit! The L.A. shared that their team would be having a meeting next week to prioritize and strategize on appropriating the funds for health issues and that my letter would be on top of the pile, that the Congressman (Levin of MI) had supported Udall and had signed the Upton-Waxman letter of support and to have PAN phone her with the needed language. She even knew of some of the specific research that was being done, which was most heartening! I was most impressed. I really was! I was much better in the office of the Senator this afternoon, only tearing up once, and there I was able to speak about how research into Parkinson's would benefit many other neurological disorders and list them. While I sat there the staffer read all 4 pages of my epistle right in front of me and HE welled up! So, at least, I got him to feel! Michael Claeys at PAN (How lucky we are to have him!) told me something I want to pass along. He said, "First you must get them to feel; then, you must get them to ACT!" So what I did in writing my letter was to be very specific in telling how it was affecting my husband in the workplace, how it might take me away from my teaching position as a special educator of children who also needed me to assume greater responsibility as a care-partner, how great the return on the country's investment would be if a cure or an effective treatment could be found in time for us alone, how this disorder impacted the nation financially, how close we were to finding a cure or effective treatment and how funding Udall could make it a reality! Man, I hit it all! We all have stories. AND THEY CAN MAKE AN IMPACT! I did learn that email messages get sort of lost. The congressman's office explained that they are very hard to track and last on the list as they take a lot of time to sort through. And she shared that they were responsive to and actually liked typed letters as long as they didn't sense that they were form letters. I do think that taking them in is worthwhile but mailing them is, too, and NOW IS THE TIME IF EVER IT WAS! Something I think I may do is to prepare a number of letters and give them to folks in other districts and even states, all typed and ready to go. Seriously, if you want to find out what district anyone is in, just go to www.pdaction.org, input your zip or the zip of anyone else and you'll get the district, who the rep. and senators are, how to contact them, etc. Then give the letters, all typed and ready to go with the return address and the address of the elected official, to friends and family not in your district. It will be all done for them. Perhaps we could even generate some samples on line on this list! What do you think? This will be time well spent. That $100,000 is out there waiting for US. We have a right to it. We have a right to feel more than a bit of righteous indignation that it has been approved but not yet funded and we have a right, maybe even a responsibility to say that AND I DID! I SAID I FELT INDIGNANT ABOUT IT! I wish I could remember who said it because I want to give credit where credit is due and I want to say it correctly, which I will probably not, but recently someone on our list indicated or said something to this effect: "If they're not going to give it to us because we need it, then they've got to do it because it will impact them." That wasn't it, but that IS the message we have to send, too. It is our responsibility! I might be getting a bit carried away here. Wouldn't be the first time. So let me know, which I'm sure you will. The worst that can happen is that I will cry! That seems to be par for the course these days. You were a great choir to hear me out and now it's time for your beautiful voices to be heard! Barb 53 cg Art 56/1 year