hi all a big thank you to mary manfredi (of the famous Mary's Mailbag column in the PDF newsletter) who forwarded the following message from the PDF executive. janet ps cross-posted to the MGH pd webforum >----- Original Message ----- >From: Renay Crooms >To: [log in to unmask] >Sent: Tuesday, March 13, 2001 5:28 PM >Subject: PDF"s Fetal Cell Transplantation Statement for the Listserv > >Mary, > >As I said in the answering service message I left you this evening, >I simply can not seem to gain access to the Listserv. Would you >please post the following message to the Parkinson's Listserv for >me. > >I will call you tomorrow morning. > >Thanks. > >Renay > >----------------------------- To the Listserv, Many of you will already have read or heard about the new research report on fetal cell transplantation that appeared in the March 8th edition of the prestigious New England Journal of Medicine. The disappointing findings, aggravated by the negative tone of some of the news reports (including the article that appeared in The New York Times on March 8th) will be upsetting to many in our constituency. Dr. Rowland, President of the PDF's Board of Directors, and I thought our Foundation could make a contribution by giving folks some more positive and complete context in which to read these disappointing findings. Hence the attached statement. The fetal cell transplantation news release statement will also be listed on our website: http://www.pdf.org/ Please call the Parkinson's Disease Foundation at 1-800-457-6676 with any questions. ------------------------------------------------------------------------------ Report of a Study of Fetal Cell Transplantation for Severe Parkinson's Disease: ------------------------------------------------------------------------------ A Statement by the Parkinson's Disease Foundation ------------------------------------------------------------------------------ New York, March 8 -- Newspapers today covered an important report on Parkinson's research undertaken by scientists at the University of Colorado and Columbia University and published by the New England Journal of Medicine (NEJM). The subject was the first double-blind study to determine whether fetal cell transplants can be effective in restoring dopamine function and help patients. What they found was that the benefits were meager and the adverse effects, serious. These results are disappointing to the million or more Americans and their families who live with Parkinson's disease. But the report needs to be seen in context. First, while the study clearly shows that this technique is not ready for widespread adoption at this time, it does reveal some useful clues for future research -- including the finding that dopamine cells can take root, survive and function following a transplant. This finding is important to our overall understanding of the potential for regeneration of damaged dopamine-producing systems and has implications for future research. Second, the most alarming finding -- the inability of scientists to control the function of the implanted cells in such a way as to keep them from overproducing certain chemicals that trigger disturbing involuntary movements -- itself presents a challenge to scientists to design new studies of stem cell biology. These studies should initially be conducted in animals, not in human beings. Third, we must remind ourselves that the process of scientific inquiry is a investigative journey, not a sure destination. Successes are always more welcome than setbacks, such as this one, but even setbacks carry crucial lessons for future investigation. Fourth, and this point is especially important for people with Parkinson's, cell transplantation of this kind is only one of several promising avenues for new approaches to Parkinson's therapy. Others include gene therapy, the study of environmental toxins, the investigation of genes associated with Parkinson's, and the potential of pluripotent stem cells. Finally, and most important, reports such as this one show how vital it is that we continue to explore and support research into the causes and cure of Parkinson's, through basic science and through clinical studies. The path of any campaign is inevitably strewn with surprises, not all of them good. Our posture when a bump in the road is encountered must be to keep our eye on the goal: improving scientific understanding of the processes that lead to Parkinson's and exploring therapies that have promise to arrest, relieve and perhaps even anticipate the disease. As Drs. Gerald Fischbach and Guy McKhann (respectively, the former Director and the current clinical director of the National Institute of Neurological Disorders and Stroke), wrote in an editorial that appeared in the same edition of the NEJM: "The brain is a most complex structure, so incremental results on the way to cures should are to be welcomed rather than dismissed as less than perfect." At the Parkinson's Disease Foundation, in behalf of our community of people with Parkinson's, this continuing commitment to research of the highest caliber will remain our beacon and our resolve. Lewis P. Rowland, M.D., President ------------------------------------------------------------------------------ janet paterson, an akinetic rigid subtype, albeit perky, parky PD: 54/41/37 CD: 54/44/43 TEL: 613 256 8340 EMAIL: [log in to unmask] "A New Voice" home page: http://www.geocities.com/janet313/ . "New Voice News" latest posts: http://groups.yahoo.com/group/nvnNET/ . ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn