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For those of you who haven't heard it, the NPR story on Parkinson's advocacy is tremendous. Below you will find a transcript of the piece. The vast PAN bureaucracy is frantically copying tape recordings of the piece, and we will soon have copies available for those who desire them. Allow me to now take this opportunity to respond to a frequently asked question: Will we be distributing taped copies and transcripts of the piece to all Members on Capitol Hill? No. I know first hand that Congressional offices are innundated with all sorts of unsolicited video and audio tapes, books, reports, and other such materials. Some do get read, or viewed, if they look really iteresting, but most get either tossed or put in a pile of "misc. reference materials to be reveiwed later." My experience is that audio tapes are the least effective vehicle for delivering info to Members and staff -- if they are not already expecting it. So with the knowledge that we do not have unlimited resources, I believe the most effective use of this story is to target it to specific Members, e.g. those lacking much knowledge of Parkinson's, or undecided about the Udall bill -- and only give it to them once we've sold them on how good it is. The best thing to do is to hand the tape and the transcript directly to the Member and/or staffer, once you've told them about it and got them interested. Use it like the Funding Disparity Chart or Fetal Tissue Fact Sheet, as another effective tool in your advocacy tool box. Of course, we will be providing copies to our Champions (Upton, Waxman, Wellstone and McCain), as well as to any Members, advocates or support groups who want them. Transcripts will be available at our website (http://www.pdaction.org), and hardcopies will be available at the home office (800-850-4726). This story is indeed another compelling and pursuasive weapon in our arsenal, and I feel strongly that it's far too valuable a weapon to squander on indiscriminant carpet-bombing of Capitol Hill. (Well, with Bob Dornan out of Congress, somebody has to make the ridiculous military metaphores!) And finally, I feel aobligated to mention that these tapes are costing us about $1.50 each -- and with labor, that's about $1.52, so whatever people can do is greatly appreciated. Enjoy- <Show: WEEKEND ALL THINGS CONSIDERED> <Date: JANUARY 12, 1997> <Time: 20:00> <Head: Parkinsons Disease> <Sect: News; Domestic> <Tran: 011207np.216> <Type: PACKAGE> <Time: 20:46> Part 1 of 1 DANIEL ZWERDLING, HOST: Sometime in the next few weeks, a small group of activists will take to Capitol Hill to try to persuade members of the new Congress that the nation is committing a cruel injustice against roughly 1 million sick Americans. Most of you have heard of Parkinsons disease, obviously. But the activists argue that few people realize how devastating it is, and just how many Americans have it. And they say the federal government isn't doing anywhere near enough to search for a cure. On Friday, a handful of Parkinsons warriors huddled at a popular restaurant just a few blocks from the Capitol, to plan their Congressional attack. SOUND OF A RESTAURANT 1st PARKINSON'S ACTIVIST: We can sign up as many people as possible so we force the committees to have early consideration of this bill in this Congress. 2nd PARKINSON'S ACTIVIST: Well, I agree. But I think... ZWERDLING: For the past few years, these activists have been lobbying one legislator after another, urging them, pleading with them, to boost federal funding on Parkinsons research. And we decided to follow one of them, to learn how victims of a little-understood disease try to work the system to make their suffering a national priority. The story began last spring at a hotel ballroom in Washington. CROWD SOUNDS AND MUSIC AT A HOTEL BALLROOM It's a tradition in the Nation's Capitol. A nondescript hotel. A cocktail hour. And a dinner of chewy chicken. And, if you're lucky, guests who write big checks to fund your lobbying crusade. As well arrived at the fund raiser for the Parkinsons Action Network, we found one of the diners limping down the hall. Millie Kondracke (ph) said her Parkinsons symptoms are getting so bad that she keeps losing her balance, and at times she wears a bicycle helmet around her house. MILLIE KONDRACKE, PARKINSONS DISEASE SUFFERER: I have six stitches in my eye, and I have three in my head. I fell. ZWERDLING: Where do you fall? KONDRACKE: I fell and hit my husband's dresser. I fall at least once a day, and I get hurt once a week. ZWERDLING: People often think of Parkinsons as an elderly people's disease, but actually many victims are middle-aged, like Millie Kondracke. Kondracke worked for years as a psychotherapist, but quit because she's too sick to treat her patients. As the waiters serve the appetizers, Kondracke says it's crazy they have to hold a party like this to scrounge for money to make Congress understand how Parkinsons affects the nation. And it makes her angry. KONDRACKE: I feel like I have very little time before I feel like I'm dying. Even though research is five years away from cure, that's what people say, I don't feel like it's going to happen. I just feel like I'm waiting to die. JOAN SAMUELSON, MASTER OF CEREMONIES AT PARKINSONS ACTION NETWORK: Hi everybody. Thanks so much for coming. This is a wonderful evening for the Parkinsons Action Network and the Parkinsons community. ZWERDLING: According to some estimates, 50,000 Americans discover they have Parkinsons every year, including boxer Muhammad Ali and Attorney General Janet Reno. Even the Pope has Parkinsons, according to some reports. And as the banquet got underway, Master of Ceremonies Joan Samuelson suggested that Parkinsons patients have to blame themselves in part for their lack of visibility. SAMUELSON: With our bravery, what we've done is we've rendered ourselves a bit invisible. Because we want so badly to be out in the world, and living and functioning just like everyone else. So we don't complain very much. And as a result the American public hasn't known how awful Parkinsons is. And the Congress hasn't known how awful Parkinsons is. ZWERDLING: And they haven't known, Parkinsons activists say, partly because victims can mask their symptoms with drugs for five to ten years, until the effects of the medications wear off. Nobody knows exactly what causes Parkinsons, but scientists do know that it destroys the brain cells that produce a crucial chemical, called dopamine, which directs the brain to control the body's movements. So as the disease progresses, you get weakness in the limbs and uncontrolled shaking, and eventually many victims end up paralyzed and unable to swallow or speak. Some groups have been working for years to raise money for Parkinsons research. But according to federal statistics, the government spends far more money per patient studying diseases such as multiple sclerosis than it spends on Parkinsons, even though Parkinsons strikes more people. And one reason there's a gap has nothing to do with science, some health analysts will tell you. It's because other disease networks have done a better job lobbying Congress and taking their message to the public. UNKNOWN ANNOUNCER FOR MULTIPLE SCLEROSIS ASSOCIATION: MS is the great crippler of young adults. The Multiple Sclerosis Association of America has helped thousands of patients cope with the effects... ZWERDLING: The point, some scientists say, is not that one neurological disease is more or less important than another. It's just that Parkinsons deserves more money, period. Neurological researchers are convinced that they're close to making breakthroughs in understanding what causes Parkinsons and how to treat it. And they say the faster they crack those mysteries, the faster they'll learn to fight Alzheimer's and other neurological diseases, because all these illnesses share common properties. And patients like Joan Samuelson decided to take that message to Congress. Samuelson herself has Parkinsons. SOUND OF TEA KETTLE WHISTLING As she makes tea one day in her basement apartment here in Washington, her left leg jerks uncontrollably, as though it belongs to someone else's body. SAMUELSON: I have teas, and I'm kind of big on herbal stuff... ZWERDLING: When Joan Samuelson learned she had Parkinsons 10 years ago, she was 37 years-old, working as a corporate lawyer in Los Angeles. Soon her hand began shaking so much that she'd sit on it in court. SAMUELSON: Appearances are so important in law practice, and I'd already gone through the process of convincing people I was tough as a woman. I'd already had clients say: "Are you going to cry in the court room? And: "Are you really as tough as the other guy?" And maybe it was in part that -- I had already had enough hurdles to present myself as a strong macho lawyer. And I couldn't imagine: "Good morning, your honor. First of all, before I go into my argument, I need to tell you about my disease." It just seemed inconceivable. ZWERDLING: Joan Samuelson quit her job, and partly as a way to overcome her despair, she began calling Parkinsons groups to ask how she could help them pressure the government to step up its research. And she discovered something curious: there were hundreds of Parkinsons groups across the country providing victims with emotional support, but hardly anybody was doing intensive political lobbying. So Samuelson began raising money to make herself a Parkinsons lobbyist. SOUND OF FOOTSTEPS IN THE CAPITOL And before long she and other activists began knocking on doors on Capitol Hill, trying to convince legislators to pass a Parkinsons research bill, which would set up an extensive network of Parkinsons research centers across the country. We joined her one day, after the fundraising dinner last spring, in the hallways of the U.S. Senate. SAMUELSON: Hi. UNIDENTIFIED MALE SENATE STAFFER: Hey. SAMUELSON: How are ya? ZWERDLING: It was an audacious campaign, asking legislators to boost funding on one disease while they were slashing spending on welfare and the rest of the budget. But Samuelson says she learned that victims who lobby hardest get results. SAMUELSON: When I would make the rounds on Capitol Hill, I would realize that when I walked in the door it was the first time that a Congressman had ever had someone visit him and talk about Parkinsons. And they'd say: "Yeah, Parkinsons, um, yeah, that's nerves, right?" There was no awareness of what the implications of it were. There was a common belief that it's a fairly benign disorder. That we pop a pill and the symptoms go away. That it's OK. ZWERDLING: And Parkinsons activists faced other obstacles as they worked they Congressional corridors over the summer. For instance, some legislators were convinced that Parkinsons does deserve more attention, but they said Congress can't go around passing bills to fund this disease or that one every time a bunch of victims begins to lobby. It would turn the whole thing into a disease-of-the-month club. But gradually Parkinsons began gaining ground. One of their strongest supporters was Democratic Senator Paul Wellstone of Minnesota. Both his parents had Parkinsons, and when Samuelson dropped by this office one morning, Wellstone had good news. U.S. SENATOR PAUL WELLSTONE (D-MN): I'll just tell you right now: I am quite prepared to go to the floor with this. SAMUELSON: That's great. That's great... ZWERDLING: As Parkinsons activists searched for more supporters, many felt they needed something dramatic to make legislators sit up and take notice. They needed a famous American who has Parkinsons to make it an emotional issue, the way former First Lady Betty Ford got the nation to talk about alcohol and drug abuse. And the way actor Christopher Reeve is getting the nation to focus on spinal injuries now. TOM BROKAW, NBC NEWS ANCHOR: Congressman Morris Udall, who made the keynote speech at the Democratic National Convention this past summer, now has disclosed that he is suffering from Parkinsons disease. FORMER U.S. REPRESENTATIVE MORRIS UDALL (D-AZ): My doctor says I've got another... ZWERDLING: That's an excerpt from the NBC Nightly News back in 1980. When Parkinsons activists looked around the country to choose a figurehead for their cause, they realized that Morris Udall was perfect, because of what he used to be, and because of what he's become. Before he got sick, Udall was the ultimate activist: a champion for Americans who didn't have a loud voice, including Native Americans and the poor. He was one of the best legislators on Capitol Hill. Virtually all his former colleagues agree on that: honest, hard- working and funny, even when telling supporters that he wouldn't run for the presidency in 1984. UDALL: The day you come to Washington as a U.S. Senator, the assumption is that you're a presidential candidate if you're under 65 and not under indictment or detoxification. LAUGHTER Then I remember that great moment: the flight from Phoenix to Los Angeles, and then to Sacramento, for one of the great quadrennial cattle show and oratorical contests. Some great wit defined these cattle shows, I think, perhaps it was I... LAUGHTER ... who described them as political foreplay, in which one must touch all of the erogenous zones in the body politic. LAUGHTER ZWERDLING: But since Udall got sick, he's come to represent every Parkinsons patient's worst nightmare. In the late 1980s, Udall married for a second time, a lobbyist named Norma Gilbert. Norma says she knew Udall had Parkinsons when they began falling in love, but neither of them expected his health to crumble so fast. Udall started having trouble dressing himself. He began garbling his words while giving speeches. SOUND OF AN ELEVATOR On a recent morning we follow Norma Udall as she visits her husband at the Veterans Affairs Nursing Home. As we step off the elevator, we pass a cluster of elderly patients sitting in a semi- circle in their wheel chairs, getting gentle exercise... SOUND OF PATIENTS IN A HOSPITAL EXERCISE LEADER FOR WHEEL CHAIR-BOUND ELDERLY PATIENTS: Ready. Follow me. ZWERDLING: We can see the dome of the U.S. Capitol... EXERCISE MAN: Number one. ZWERDLING: ... through the picture window. EXERCISE MAN: Both hands are moving up now. Bring 'em down slowly. ZWERDLING: Norma says her husband used to say that he didn't want to become a poster boy for Parkinsons. He didn't want to fish for sympathy. But after Udall lost the ability to speak for himself, his family gave Parkinsons activists permission to create the ultimate monument to his name. SOUND OF FOOTSTEPS They decided to call the legislation they were pushing in Congress the Morris K. Udall Parkinsons Research Bill, and hope the memories of Udall on Capitol Hill would still be potent enough to help get the bill passed. Morris Udall's room at the Veterans' Nursing Home is at the end of a long linoleum hallway. When Norma enters the room, he's in bed, lying on his side, the way he spends much of his days. Udall has not walked or talked in six years. He's fed through an intravenous tube. Udall's doctors say there's no way to know if he comprehends that President Clinton awarded him the Medal of Freedom a few months ago, the highest civilian honor. SOUND OF TELEVISION NORMAN GILBERT, SECOND WIFE OF FORMER CONGRESSMAN MORRIS UDALL: Well, good morning. Good morning, love. Hi Mo. Hi sweetheart. Shall we turn off the television? Would you like that? Let's lower it, OK? Do you remember I was here last night and we talked about the award again? About the White House award? Medal of Freedom. How exciting it was. People are still calling and writing. Everybody's just thrilled for you. And it's so well-deserved. Cause you're just so good. You're a good man, Mo. ZWERDLING: Just before Congress adjourned for the elections, the Parkinsons activists won their biggest and most stunning victory: the Senate unanimously passed a measure that included most of the key language in the Morris Udall bill. And then the Parkinsons crusade fizzled. On the other side of the Capitol, over in the House of Representatives, anti-abortion forces lobbied against a provision concerning fetal tissue research and their Congressional allies blocked the vote. So when the 104th session of Congress adjourned in October, the Morris K. Udall Parkinsons Research Bill died with it. SOUND OF PEOPLE IN THE CAPITOL But today there is a brand new Congress, the 105th, and Parkinsons activists, including legislators like Senator Paul Wellstone, are already plotting how to win the extra votes they need to turn their passions into law. Wellstone says they're going to call on Parkinsons patients back in their home districts to lobby even harder. WELLSTONE: And what I'm going to say, in debate on the Senate floor, and what I'm going to say to my colleagues: it would be callous to not spend at least a little bit of dollars in research here. I mean, time, again, is not neutral. I mean, it's easy for you to sort of put this off. It's not easy for the people who are struggling with the illness. And the people who are struggling with the illness are going to need to be here again at the Congress. We need to be tenacious. That's how we turn up the heat, and that's how we pass it. We're going pass the bill. ZWERDLING: Parkinsons forces are planning to introduce their new version of th e research bill on the floor of Congress toward the end of this month. And even their critics will tell you that whether they win or lose this time around, Parkinsons activists have already achieved something remarkable. They've put Parkinsons disease on the political map. And for this evening, that's ALL THINGS CONSIDERED. >From [log in to unmask] Parkinson's Action Network 800-850-4726 Headquarters: 818 College Ave., Suite C Santa Rosa, CA 95404 phone 707-544-1994 fax 707-544-2363 email: [log in to unmask] Washington, DC office 601 13th St. NW., Suite 310 Washington, DC 20005 phone 202-628-2079 fax 202-628-2077 Brad Udall, Chair Joan I. Samuelson, President John L. Dodge, Treasurer Bonnie K. Mioduchoski, Administrator Michael Claeys, Community Coordinator The Action Reporter is a free publication of the Parkinson's Action Network, a non-profit charitable foundation for a cure for Parkinson's. Use of this material in other publications is welcomed. We ask that the Network be identified as the source of the material, and notified how, when and where the material is used. Simply call 800-850-4726