 |
 |
Jim and the Rest of the List, Great post! Here is what we are distributing next week through the (Houston Area Parkinson Society) HAPS newsletter to our 1000 members. It's a little different than yours because Joan Samuelson is still talking to Senator Mc Cain and others about introduction on the 29th. Either way we win so Ii am showing alternate dates for the Bills's introduction. HAPS News Letter March 15 Udall Parkinson's Bill Alive and Well The 105th Congress is in session and the new Parkinsons Research Education and Assistance Act (Udall Parkinson's Bill) will be introduced either April 9, or April 23. While the 104th congress did not complete the approval process for last years Udall Bill, it was approved unanimously by the Senate as part of the NIH Reauthorization. Unfortunately the House did not act on the bill so we must resubmit the bill to the 105th congress. Since our last report many positive things have been happening. We have the beginnings of a National Parkinson's Coalition that includes the APDA, NPF PDF, PI and PAN. Early meetings have served to identify differences but have validated the importance of the Udall bill to the PD community. In the Senate, Senator Paul Wellstone (D) MN, and Senator John McCain (R ) Arizona have agreed to be principle Co-Sponsors. In the House Congressman Fred Upton (R ) and Henry Waxman (D) California have also agreed to Co-Sponsor. The bill will have all the key points that the last bill had and will request $100 million. You can help greatly by calling our Senator's and Congressman and by asking them to support the Udall Parkinson's Disease Bill. A schedule of events for the next few months follows. March 24 - April 4, Congress will not be in session and members will be at home in their district offices. This is an excellent time to call and visit them. Let them know who you are and how much you care. April 9, alternate date for introduction of the Udall bill. April 23, Muhammad Ali to testify before the Senate Appropriations Committee - alternate date for Udall Bill Introduction. Expect national media coverage. April 29, Udall Awards Dinner in Washington honoring Congressman Fred Upton (R ) Michigan and Senator Tom Harkin (D) Iowa for their support of the Udall initiatives. The PAN Forum is scheduled for June 9 -12, in Washington. Any one (From Texas, Arkansas and Oklahoma) wishing to be an Advocate should contact Bob Martone at 281-358-5168 and/or the Parkinson's Action Network at 1- 800-850-4726. The forum includes Parkinsonians and caregivers from all over the country and provides in-depth training on how to be an advocate for PD including scheduling visits with your representatives to discuss the Udall bill while you are in Washington. Bob Martone -------- REPLY, Original message follows -------- > Date: Thursday, 13-Mar-97 04:21 PM > > From: [log in to unmask] \ Internet: ([log in to unmask]) > To: Parkinsn Mail \ Internet: ([log in to unmask] utoronto.ca) > > Subject: WE HAVE A PLAN ! > > I'm joinning Bob Dolezal in presenting this plan of action( see separate post). > The plan is the same, the appeal a little different. I hope that one of these > appeals motivates everyone. This plan had substantial input from Teri Whitling > and Bob Martone among many others. After a long winter staring at the specter > of a year of lost opportunity (our failure to pass the Udall Bill), I feel the > excitement of spring and a new initiative building. As the bulbs begin to > break their way out of their dormancy, I see my fellow advocates beginning to > emerge. Just as these bulbs will surely burst into the warm sunshine of > summer, I look forward to basking in the success of passing the Udall Bill. > > HERE'S THE PLAN > > Now is the time. Our leaders have positioned us such that victory is ours > for the taking. That victory is increased funding for Parkinson's research (the > Udall Bill). > We now have a plan. > > 1) WRITE & CALL/VISIT IN DISTRICT - The last week in March and > the first week in April Congress is on recess. Visit every Congressman > and Senator possible during that two week period and politely insist that > they cosponsor the Udall Bill which will be introduced upon their return. Prior > to a visit or if you can't visit - write or call (800-962-3542 the capitol > switchboard, just ask for your Congressman or Senator) Calls and letters are > not as effective as a visit but are the next best thing (on their own ) and > compliment a visit(demonstrating the visitor represents many more) > > 2) INTRODUCTION - The Udall Bill will be introduced by Senator McCain and > Congressman Upton on Apr. 9th. Equally vital to the ultimate success is the > support of their minority counterparts Senator Wellstone and Congressman Waxman > 3) ALI AT APPROPRIATIONS - Two weeks later, on April 23rd, Muhammed Ali will be on Capitol Hill to testify before the House Appropriations Committee. We will > recruit a group of advocates and go to Washington that week to contact any and > all of those who have not yet agreed to cosponsor. Word of Ali's presence on > the Hill should maximize our presence and impact. > > 4) FINALE - On April 29, as the grand finale, PAN has its annual Udall Awards > dinner. By that time we should have as cosponsors the majority of both houses. > > We then will have given our political leaders (McCain, Wellstone, Upton and >> Waxman) a majority in both Houses far earlier than last year and Congress > will not be adjourning early for a presidential election. We will also have > given them something almost as important - a dramatic demonstration of the unity and resolve of the Parkinson's community. A message that we will not be > denied. > > My challenge is to come up with the words that will motivate people, many > who may have never been involved in politics or perhaps do not even know who their Congressman is, to summons up the nerve, resolve, chutzpa, cojones (call it what you will), and go see their Congressman and Senators. There is simply no substitute for seeing your elected official in person. If during that > visit you convey the misery brought about by this affliction and establish that a cure or new effective treatment is close, then that person must look you in the eyes and either say "Yes, I will help" or "No, I will condemn you to a life of disease and suffering". The latter is extremely difficult for one human to say to > another. If you have Parkinson's and would like to do your part to cure this hideous disease, plan on seeing your Congressman in person during those two weeks. Call now as you may have to convince their aides that you will see your elected official if you have to sit on the door step. Tenacity should not be a problem for those who suffer daily with this scourge. You cannot convey this emotion by phone or letter. You cannot convey this emotion through an aide. It takes a personal visit and it works. My wife and I have personally seen 23 elected officials and 19 have agreed to cosponsor. Conversely we have spoken to 20 aides and only 10 of those elected officials have agreed to cosponsor. If you want to one day have the freedom of movement we all use to take for granted, you simply must seize this opportunity. > > This is it folks. We need to get this legislation passed now. We must > demonstrate that the Parkinson's community has the resolve to demand that > we obtain the breakthrough that the neuroscientists tell us is so tantalizingly close. We cannot keep coming back year after year with the same message. This is the year we must get it done. > Jim Cordy > Pittsburgh > [log in to unmask] -------- REPLY, End of original message -------- -- [log in to unmask]