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The following message is from Perry Cohen, a PWP who has been off the List for a while. He has still been following our political discussions, which I've been forwarding to him and to other very-busy friends,just to save them a little time so they won't have to search in the archive. [log in to unmask] _______________________________________________________________ From: [log in to unmask] I have not subscribed to the listserve for some time now (My rusty brain couldnt handel the volume.). Rather be Too too long I am going to write two messages. This message has to do with progress our community is making in our efforts to expedite research toward finding a cure now that the Udall bill has been passed and the first post Udall appropriations have been enacted. My location in Washington and my professional career as a health management consultant including a substantial amount of work with the NIH point me in the direction of building a positive LIAISON with NINDS (Neurology Institute) as a major focus of my contribution to the cause. Other efforts such as raising seed grant money are also important. My second message will address the question of coordination (not unity) among Parkinson's organizations which I notice is on the table again. The issue of organizational coalitions and interorganizational coordination has been a constant theme of my professional career starting with my Doctural Dissertation in Organization Behavior, and most recently with PD organizations in the liaison role described above. A key element of the liaison effort described here has been the coordination of ALL the major national PD organizations in the activities While the individual PD organizations all have contacts with NINDS, the liaison activities here are the only linkages with NINDS that provide a COLLECTIVE voice (ie more than one organization) for the PD community. This alone could have enormous value because a collective voice carries more weight than the sum of individual voices. The second message is harder message to write (because the process is not necessarily pretty and certainly not without challenges), but I hope to be able to contribute to the discussion soon. What follows is a summary of points covered in meetings with NIH officials and the actions that have followed. ------------------------------ LIAISON WITH NIH Summary of Liaison Meetings: On March 8th and 9th, meetings of interest to the PD community took place at NIH. On Monday, March 8th, a substantive meeting took place at NINDS with the Director, Dr Gerald Fischbach, and the Communications Director, Marian Emr. This was in preparation for Tuesday, March 9th , when representatives from PD organizations and PWPs met with the NIH Director, Dr. Harold Varmus, and the Directors of Institutes heavily engaged in PD Research -- National Institute of Neurological Disease and Stroke (NINDS--Dr. Gerald Fischbach) and National Institute on Aging (NIA--Dr. Richard Hodes). The purpose of the meeting was to initiate a dialogue with NIH officials on ways that PD organizations can assist the NIH in implementing the Udall Act and ultimately in expediting discoveries that result in cures for PD (i.e., treatments that reverse symptoms). Major national PD organizations -- including NPF, APDA, PDF, PAN -- participated in the discussions preceding the meetings. Expected participants from the Parkinson's Community were Mr. Larry Hoffheimer, Mr. William Turenne, Mr. Paul Smedberg, Ms. Joan Samuelson, Mr. Michael Claeys, Mr. Clarence Kipps, Ms. Kathleen Kenety, and Dr. Perry Cohen. Due to inclement weather, when Washington was hit by a major snowstorm, not everyone was able to attend the Tuesday meeting, but the preliminary meeting and prior discussions to plan the meeting had already attained the objective of initiating a constructive dialogue. As a result of this dialogue with the Director of NIH and other NIH officials responsible for research policy on PD, a positive tone was established. A number of ideas were discussed to help expedite research toward a cure for PD. Follow-up of the meetings will be primarily through the lead agency for PD research, NINDS. Key contacts are the NINDS Director, Dr. Gerald Fischbach and the Communications Director, Marian Emr. Based on these meetings, subsequent discussions with Ms. Emr, and a meeting of PD representatives, the following items are activities that PD organizations and NINDS intend to pursue individually and collectively. ** Coordination of PD activities across Institutes at the NIH. NINDS takes responsibility to review status of Parkinson's Coordinating Council and initiate action to make this council more active and effective. PD representatives will be invited to sit on the Council to provide input from the PD community into the NIH coordinated planning process. *** Epidemiology and data for planning and research into causes and treatment of PD. Primarily NINDS responsibility: NINDS intends to plan a broad study on Neurological diseases epidemiology in conjunction with other Institutes (aging, mental health). NINDS has initiated the process of developing the "registry" called for in the Udall Act and seeks PD community input into the process. The PD community would have input into the planning and data collection through direct interaction with NINDS and representation on the NIH Coordinating Council. PD organizations would have valuable resources to offer, such as grass roots access to patients nationally. *** Initiation of scientific conferences to identify research opportunities. NINDS intends to plan annual rotating conferences in areas of surgical treatments, medical treatments, and pathogenesis. NINDS has conference grants to support initiatives of PD organizations. *** NIH definition of "focused" (Appropriations Committee Report Language) research and other matters related to accountability to demonstrate implementation of the Udall Act. Individual PD organizations work with Congress to assure that NIH is accountable to implement the Udall Act. NINDS and PD organizations may share information on the complex issues of coding research for reporting to congress. *** PD community support for recent rulings of the NIH to continue stem cell research and the efforts of some in Congress to double the NIH budget over 5 years. Individual PD organizations take responsibility to participate in coalitions (i.e. APDA and PAN have joined a coalition of voluntary health organizations organized by the Alliance for Aging Research, which is aimed at dispelling myths and educating Congress on the value of stem cell research). Collectively through the PD coordination group and others and individually, PD organizations will communicate with Congress and the Executive Branch (i.e. White House, OMB, and HHS) about the great promise and need for increased PD research funding. Perry Cohen April 29, 1999 ------------------------------- NINDS RESPONSE On Friday, 4/30 I received the communication below from Dr. Fischbach, Director of NINDS, which outlines progress on the list of activities that we discussed in our March meetings with NIH. It appears that we have the door open to play a constructive liaison role with NIH on behalf of the Parkinson's community. Perry, Thanks for the Summary. E-mail is a very good way to communicate in our hectic world. You can contact me directly or you can contact Gene Oliver or John Marler, the two NINDS Program Directors most closely related to Parkinson's Disease issues. We have planned an NIH Parkinson's Disease Coordinating Committee meeting in early June. The group wanted to meet once in the late Spring and then invite the patient Advocay groups to the Fall meeting. We have also progressed on the series of workshops that I described to you. We will begin with a workshop on pathogenesis - probably in the Fall, and this will be followed by a workshop on medical therapies and then one on surgical approaches. the cycle will be repeated on a regular basis. We hope for a detailed workshop every 6 - 12 months. Gerry