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Pul-eeeeeeze, Ivan, black leather and flowers are SO passe! To make it in Washington you need to wear a power suit - uhhhhh.... except on "casual Fridays." <grin> - OR to be a world famous celebrity. Kidding aside, m'dear, no one ever promised us it'd be easy, but at the same time, no one ever told us it'd be THIS tough to not only get the &!@%! Udall Bill not only passed but funded. YOUR frustration is shared by all of us - it's a COLLECTIVE frustration. And your hatred of this terrible disease is ALSO a collective hatred. Personally, I believe there's one element missing from the grass roots advocacy, and that's an effective showing of NUMBERS... Hundreds and thousands of tremoring, shaky, and... well you know the assorted movement disorder symptoms, don't ya? PLUS their care givers, AND their families, AND their friends, in one place at the same time - kinda like the "Million Man March.... perhaps in front of the NIH....WITH the press, and WITH as many celebrities as is humanly possible. And this shouldn't be limited to just PD... it should reflect those movement disorders that are similar to or related to Parkinson's because folks with THOSE diseases not only stand to benefit from PD research but they also swell our numbers. We should encourage THEM to join our numbers and make them welcome! (actually, we should do THAT anyway, 'cause it's the humane thing to do) No more conferences with award banquets and chicken dinners for a couple of hundred people. We need to be seen in our entirety! We need to be recognized in our MILLIONS! Hugs and love to ya, Ivan... Barb Mallut [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of Ivan M Suzman Sent: Monday, May 25, 1998 4:32 AM To: Multiple recipients of list PARKINSN Subject: Re: Udall funding roadblock/PROTEST ACTIONS ^^^^^^WARM GREETINGS FROM^^^^^^^^^^ Ivan Suzman 48/11 [log in to unmask] Portland, Maine land of lighthouses 48 deg. Fsunny *********************************************************** On Sat, 23 May 1998 17:09:02 -0400 John Lees <[log in to unmask]> writes: >Harold, > I will help where I can but in Utah there is some confusing facts >about Udal. Senator Hatch's office when I visited told me the National >Health Institute was not giving it's support to Udal and with out it >we are >dead. > Senator Benets office told me when I went there that Udal has >never >been voted on and made into law. >What gives? > >John >West Jordan, Ut > John-- Udall Bill passed both houses of Congress in late 1997 after 4 years of struggle against politicians. NO money has been spent on the Udall research called for-which could be $ 100,000,000.00 if fully funded, for three years, total, $300,000,000.00..........just rotting away or being spent on martinis and $693 military toilet seats. At this point I am ready to wear black leather and flowers in my hair and blockade the Federal Building, get arrested in non-violent civil disobedience, or WHATEVER it takes. I am a gay man. We protested with our lesbian sisters and our families and friends, for breast cancer and AIDS research, and, we're getting money. But,l believe that Parkinson's activists like you and me have to GEAR UP for the BATTLE. I fully support and agree with the petitions, the phone calls and the pressure. But it's NOT enough. Senator Hatch is a tough nut to crack. I am very sick with Parkinson's and I absolutely HATE it. KEEP AT IT--I am one of those who is trying to rest and recuperate, and ready myself for ACTION. I hope others on the LIst will step forward and say, ME TOO! Enough is enough. Are we Parkinsons people supposed to sit quietly and rot away????? Ivan Suzman