 |
 |
Dear Folk, The 76 hours Marty, my husband, and I spent in the company of the Udall bill grassroot activists has made an indelible impression in our hearts and minds. We are grateful for the warmth and sharing, the intelligent counsel received from those with lobbying experience, the good humor and general camaraderie that permeated each contact made among the group. While acknowledging everyone=92s contribution to the over-all (hopeful) success of this and upcoming lobbying efforts, my purpose writing this note is very specific. Please repeat after me: I promise to actively work to bring about the passage of the Udall bill! Our immediate task is two-fold: educating the public about PD and locating and involving the 1.5 million PWPs in the United States. Without ALL of us making and sustaining a mighty noise, our interest will not be served! I assure you that there is a difference between reading about the mythical statistics and seeing/hearing our collective presence. Our agenda was simple for this trip: visit 20 offices (brilliantly organized by Co-Generals Deborah and Jim Cordy) of our own state=92s legislators plus a selection of other offices. Our group: Barbara Schirloff, Dolores Gross, and Joe Hardiman visited New Jersey, Delaware and Illinois offices.=20 The New Jersey line-up is predictable: our two senators and 8 Representatives are cosignors. Reps. Chris Smith(R-4), Michael Pappas(R-12) and Jim Saxton(R-3) are firmly againts the bill as long as it does not provide an exception for fetal tissue research. Reps. LoBiondo(R-2) and Roukema(R-5) need pressure from constituents. Delaware=92s Sen. Biden(D), has cosigned, Sen. Roth(R) has not had the time= to =93study=92 the bill yet. Rep. Castle(R) needs to hear from his= constituents! The Illinois picture is pretty much the same, Sens.Durbin(D) and Moseley-Brown(D)and Reps. Rush, Jackson, Jr., Guttierez, Blagojevich, Yates, and Evans have cosigned. Rep. Porter(R) has a key position on the Appropriation committee, is a very strong proponent of increased though non-earmarked funding for NIH. The 13 other Reps. need frequent and numerous contact from residents. Being a non-constituent is tantamount to being a persona non grata. We were treated with courtesy, our presentation was listened to, the hand-out materials were accepted, BUT we were merely substitutes. Until the Senators and Representatives read your letters, hear your voices on the phone or see you in person in their home offices, their schedules will not include thinking about the Udall bill.=20 We need to capitalize on the flurry of activity that is taking place these two weeks in DC. Call your legislators (toll free 800-962-3524) and ask the health or legislative aide whether they were aware of Muhammad Ali=92s testimony and were they visited by reps from the Parkinson=92s group (a= bunch of tired, but energized people wearing buttons that has PD crossed out)? These follow-up calls are most important, the script is simply: 1/ have they had a chance to discuss the bill with the member? 2/ have they decided to co-sponsor? 3/ if not, why not? 4/ what additional information can we furnish? 4/ inform them that an ever increasing number of their peers have already became cosponsors, and 5/ offer to send them whatever information they need to help make up their mind. PAN, 800-850-4726, has well written position papers on the most important issues: what the specifics are of the new bills, HR 1260/S.535, what answers can be given about earmarking, fetal tissue issue and where will the money come from. So, how do we educate the public and mobilize larger numbers of PWPs? What creative methods can we devise? These are a few thoughts: support groups can put ads in local papers, distribute flyers to organizations and community groups, make announcements on local radio/television shows. Have a national contest for the most newly recruited grassroot activists. Every group activity can become a recruitments effort: fairs, garage sales, bazaars, sporting events, YM-YWCA activities. Have your neurologist=92s office be a= hub for disseminating and collecting information. Barbara Patterson suggested using the testimonies of Joan Samuelson and Muhammad Ali to interest newspapers to write stories, it is an excellent idea. Any others? I apologize for the length of this post --=20 Margaret =20 =20 Margaret Tuchman (55yrs, Dx 1980)- NJ-08540 [log in to unmask]