 |
 |
One of the highlights of the PAN forum this week was a talk by Dr. Ken Olden of the National Institute of Environmental Health Science. New evidence from the "Twins Study" points primarily to environmental causes, or as Dr. Olden indicated a genetic susceptibility that is triggered by an environmental insult. (Environment includes such factors as diet and lifestlye, as well as exposure to toxins.) If Congress appropriates budget increases (grass roots lobbiests at the Forum are asking for $25 million for NIEHS), The NIEHS is planning a significant effort to unravel the mysteries of the causes of PD. This research will not only help prevent PD in the future, but it will also add knowledge about the processes of development of the diseases which will likely suggest new approaches to treatment. NIEHS is also part of a coordinated effort underway (in an embryonic state so far) at NIH (led by NINDS and including NIA and NIMH)to initiate a large scale prospective longitudinal study of neurodegenerative diseases, similar to the Framingham Heart study. To launch their initiative, on July 22, NIEHS is conducting a brainstorming "concept forum" to develop a PD research agenda. I have been invited to participate with NIEHS on a panel that includes distinguished scientists such as Dr. C. Tanner (Parkinson's Institute), Dr. T Dawson (Hopkins), Dr. L Nelson (Stanford), and Dr. W. Olanow (Mt. Sinai). Although I have enough knowledge of epidemiology to converse on the subject, I am primarily a patient representative in the discussion. To carry out this role as effectively as possible, I am seeking input on potential environmental triggers for PD. PLEASE RESPOND WITH THEORIES OR ANECDOTES FROM YOUR KNOWLEDGE AND EXPERIENCE ABOUT POSSIBLE CAUSES OF PD. INCLUDE DOCUMENTATION AND BACKGROUND INFORMATION IF AVAILABLE. Many of us speculate about the cause and trigger of our disease. This time your speculation can contribute to a PD research agenda. I will compile all written responses for the panel and I will use the information as a basis for my input to the meeting. To me the motivation exhibited by NIEHS has been an essential missing ingredient in our previous efforts to realize the goal of the Udall Act to devote $100m a year to Parkinson's focused research. PD grass roots political support and cooperation with NIEHS illustrates a model for working with other Federal Health Agencies as well as other Institutes at NIH, particularly NINDS, to develop research agendas to deliver better treatments to those of us now afflicted with PD and to prevent future occurences of the disease. Perry Cohen ____________________________________________________________________ Get your own FREE, personal Netscape WebMail account today at http://webmail.netscape.com.