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Hi, Our team (Nancy and Bob) has been challenged by this miserable disease for 22 years Nancy (52/22). Since we are only 52 years old, it has stolen away some of the best years of our life, but not our spirit nor our desire to seek a cure. We are continuing our fight on as many fronts as possible. This requires a huge investment of time, some talent, and the occasional use of treasures mostly for travel expenses to Washington and for PD board meetings presentations and personal hospital and home visits where we try to extend a helping hand. We are members of all the majoe PD groups and write out annual checks to each, including our locals. In short we do what we can when we can in whatever way we are able to help. To the many others that do the same a big THANK YOU. To those who feel overwhelmed, or may be suffering from that lousy depression monster that rises frequently with PD, we ask you to rise up from your chairs and your personal concerns and reach out to others including the political establishment and AWAKEN them as to the problems that we PD sufferers and loved ones must endure every single day. With regard to Udall efforts, There have been numerous opportunities to contribute, disagree, agree and remain silent. We believe silence has been our principle problem. We have been invisible for too long. That may be why we lag behind many other national efforts to provide targeted disease research. So we support the PAN motto, INVISIBLE NO MORE. Speak out and be heard. Having said this, we do believe it is important to keep the message simple and as focused as possible. With regard to Udall issues: Timing - we believe getting the bill reintroduced as soon as possible makes sense. Waiting for a big media event to introduce the bill sounds like a good idea but we are further along than that with our grass roots support structure and with our existing House and Senate supporters. Let's use every media opportunity possible to state our case but don't use it as an excuse to hold up the bill's reintroduction. Fetal tissue - we believe that the protective measures that are in place to protect the unborn and the mother are adequate and that the Udall bill does nothing to influence any of the choices that a woman may be confronted with. We believe the bill should remain silent on this subject and that the suggestion that fetal tissue could be used as a compromise issue be held in abeyance. As of this writing we see no reason to discuss the subject in terms of compromise, however we do see considerable value in discussing the ongoing projects and future projects and the potential benefits/detriments to human kind of allowing this type of research to continue. Differences of opinion: The Parkinson's Action Network at the hands of Joan Samuelson and her team has accomplished a great deal. More recently APDA, NPF and others have been making their presence felt in generally very positive ways. We must somehow focus on the pluses that each organization or individual brings to the table and minimize focusing on the negatives that also come with larger scale participation. We believe that PAN should be supported by all individuals and groups in support of the Udall Bill and concomitant activities. Once this massive effort succeeds it will be time to reexamine what structure is needed for the future. Hopefully we pass the bill this year then help the leaders develop a plan for the future to help each and every Parkinsonian. Multiple National PD organizations - At the moment we do not see a compelling case for merger of the PD groups. There no doubt is redundant overhead that could be removed from the multiple structures which would make more funds available for research, education, therapies and more, but that will take considerable time and even more resources to get that to happen. What we do support is the formation of a National Coalition that discusses and develops strategic direction for the entire PD community and that ACTS accordingly. For information, a definition: Coalition - A temporary alliance of distinct parties or persons or states for joint action. This in our judgment has been a weakness that is worth strengthening. Long term benefits will no doubt accrue. Internet content (mail, bulletin boards, web sites, chat rooms etc.) These vehicles should be explored to the fullest. Many patients/caregivers are confined or distanced from valuable information and help. Anything we can do to deliver helpful information to those who can benefit from it will be useful in both the short and long term. Those already on this list serve no doubt understand that. Since there really is no traffic cop for all this sharing, individual discretion and collective fast learning on how to manage content and distribution will create the best balance of information, and humor that leads to effective action. New PD and PD related web sites are appearing weekly. This sharing will no doubt help our cause. This is our nickle for today. We welcome feedback. Nancy and Bob Martone -- [log in to unmask]