 |
 |
My initial response to he fact that there were only 35 people registered for the PAN Forum was one of disappointment. The last day of the Forum was essentially canceled due to lack of interest. Were you to read no further you would think the 1996 PAN A d vocacy Forum a flop. Possibly Goliath was also mistakenly disappointed when he first viewed his apparently meager foe David. These 35 people, however, like David, understood that on their shoulders rested the futures of many more. In this case the burden was the suffering o f 1.5 million Americans with Parkinson's Disease. These 35 advocates had gotten a rare glimpse of the possible future by viewing a video of monkeys, crippled by Parkinson's, then treated with Amgen's new growth factor DGNF. The result was a near miracu l ous restoration of the monkey to full mobility. Armed with that vivid image and Dr Isacons reports of successful transplants of pig fetal tissue in humans as but two examples of the many areas of potential breakthroughs in Parkinson's research, we m a rched off to Capitol Hill. Our message was simple and direct : A CURE IS NEAR, PROVIDE PARKINSON'S RESEARCHERS WITH FUNDING EQULIVANT TO OTHER DISEASES AND REAP ANNUAL SAVINGS OF $6-26 BILLION - PASS THE UDALL BILL. These 35 advocates were not interested in a third day of advocacy training. Those without previous experience became veterans of extensive actual meetings on the second day. Many discovered for the first time the exhilaration of having heard a United S tates Congressman say "YES, I will cosponsor the Udall Bill." They had tasted that satisfying sense of accomplishment of knowing that their efforts had made a real difference. They wanted to get to Capital Hill. Over two days this enthusiastic band r o amed the halls of Congress, visiting the offices of 86 Congressmen and 12 Senators. Our paths crossed repeatedly while waiting for elevators, or rushing between office buildings. More often than not exchanging news of each others successes. Then gat h ering together in the evenings to share experiences in detail. There is a special relationship that sometimes develops amongst a group of dedicated individuals who have joined together and dared to try to accomplish that which conventional wisdom says cannot be done. Some of these friendships made, in this once tho u ght to be insurmountable dream of increased funding for Parkinson's Disease, will last our lifetime. A lifetime for many that, thanks to all those who battle to pass the Udall Bill, will not end in horrid confinement in a body rendered immobile by P a rkinson's Disease . Maybe now we have achieved Joan Samuelson's inspirational goal -- INVISIBLE NO MORE. Our reception was uniformly positive. The announcements of Senator Pell, Attorney General Reno, and Congressman McDade that they each suffered this wretched disease h a d reached the ears of many. Mort Kondracke's moving article in the Washingtonian had also helped. But as I have urged for many months now, WE HAVE A COMPELLING STORY AND WHEN DELIVERED PERSONALLY IT IS DIFFICULT TO IGNORE THE HUMAN SUFFERING, THE PRO M ISE OF A CURE AND THE POSITIVE ECONOMIC BENEFITS THAT WOULD RESULT. The UNOFFICIAL results show 21 additional cosponsors and a favorable feedback from the offices of 27 others in the House. On the Senate side, at least three more Senators have agreed o r indicated they likely would cosponsor. This will bring our cosponsor totals up to: 38 SENATORS AND 177 CONGRESSMAN What do we do now? Employ the same strategy that had paved the way for our assault on Capital Hill -- letters, phone calls and visits to your Senator and Congressman's office. Possibly those of you who think you missed a pretty incredible experience w ill shortly get a second chance. There is the unconfirmed possibility that we may go to Washington again near the end of June to assault Capital Hill. Should this come about we would concentrate on finding advocates from those states not yet heard from ( Florida, North Carolina, Michigan, Connecticut, Colorado, Iowa, Kentucky, Louisiana, Kansas, Illinois, Michigan, Missouri, Mississippi, Ohio, South Carolina, Tennessee, Washington and Wisconsin). The often asked question by those thousands who have written letters in support of the Udall Bill is when will it come up for a vote. If you have ever watched the news of activities in our nation's capitol you might have guessed the answer is not that s i mple. Senator Paul Wellstone of Minnesota is now our most vocal champion and is on the Senate Labor and Human Resources committee chaired by Nancy Kassebaum. He will introduce an admendment to the NIH Reauthorization Bill. With 10 of the 16 members on this committee being cosponsors, this should pass. The support of a few more such as Dan Coats of Indiana, whose father died of parkinson's, or Slate Gorten of Washington would assure passage.(Other Senators on this committee currrently not cosponsor s are Ashcroft-MO, Judd Gregg-NH). This activity is known as "mark-up" and is the final process before going to the full Senate at which time Senator Dole controls the scheduling. Prior ro this weeks PAN Forum, Ed Long of Capital Associates, one of our most savy political stratigests, felt that passage of the NIH Reauthorization with the Udall Bill as an admendment was as much as we could reasonably acheive this year. He added that this would be a significant accomplishment. I asked Ed Long privately, whose actual presentation I and many others missed due to appointments on the Hill, What if we had 40 Senators and 200 Congressmen as cosponsors? Could we pass the Udall Bill this year in both the Senate and House? His resp o nce was " with that type of support you are beginning to have a chance." Without the complete results of the second day in, the unofficial tally is at as 38 Senators and 177 Congressmen. Beginning tohave a chance????