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I returned home from the 9th Annual Parkinson's Action Network Forum, inspired, energized and with many new ideas about how we can "Turn a Diagnosis into Action" -- the theme of this year's Forum. I'd like to share some of the highlights (for me) of the forum with the list. As i go through my notes I know there is just too much to cover here, but if anyone has questions or wants more information about any of this, please contact me off list. Also see the PAN website for more information at www.parkinsonsaction.org The entire PAN staff did a terrific job and deserve many thank yous. As always the best part of the Forum was meeting other advocates from all over the country and learning about all the projects and activities going on in our shared battle against Parkinson's. Over 150 people attended this year. It was great talking in person to many parkinsn list members. It was also wonderful to meet those attending their first PAN Forum, as well as reuniting with old friends. Unfortunately I noticed this year the absence of many dedicated, long-time PD advocates who are no longer able to make the trip to DC due to their worsening conditions. It is for all of these folks especially, that we must dedicate our efforts to put an end to PD. The first day of the Forum focussed on Research and Education. Among the distinguished researchers who addressed us and answered our many questions were: Dr. Gary Fiskum of the University of Maryland who discussed the role of mitochondrial impairment in Parkinson's disease. The mitochondria is the location of cellular energy metabolism, and is the primary target of toxins that have been shown to model PD in laboratory animals. Dr. Fiskum's research also entails developing "clinically feasible neuroprotective interventions." He suggested that rather than looking for one treatment, a "neuroprotective cocktail" might be developed. He also stressed the importance of collaboration between the NIH and the pharmaceutical companies on clinical trials and also preclinical development of new neuroprotective treatments. (more on COLLABORATION later, which was a major thread running throughout the Forum) Dr. Clive Svendsen of the Stem Cell Research program at the University of Wisconsin spoke about his research with GDNF (glial cell line derived neurotrophic factor) He called this protein - "a fertilizer for the brain" Researchers at the University of Kentucky and in Bristol, UK have found that by continuously infusing GDNF into the brain using a pump, patients experienced measurable improvements. (Results published in Nature Medicine, March 31, 2003, Gill et.al). Dr. Svendsen said he was "cautiously optimistic" about these results. A larger, double blind trial is now being conducted by Amgen Pharmaceuticals. Dr. Howard Federoff, of the University of Rochester discussed collaborative (there's that word again) gene therapy research for PD which involves developing preventive tactics, halting and reversing existing damage to neurons, and restoring dopamine production. He is leading the Parkinson's Disease Gene Therapy Study group - a consortium of 7 research institutions throughout the U.S.- all cooperating on an interdisciplinary approach to the research. Each institution is focusing on a certain aspect of the research - such as delivery vectors, identifying target genes, turning on and off gene switches in the brain, immune reactions and other adverse effects, use of neuroimaging techniques to evaulate treatments, developing new biomarkers for the disease (e.g. identify possible proteins in the blood), bioethical aspects, and minimizing intellectual property barriers) -- and then will pool all data and results - which will hopefully lead to effective and safe gene therapy treatments. Dr. James Joseph of Tufts University was one of the speakers on "Non-traditional therapies for Parkinson's". (Also i think he won the prize as having the best sense of humor among the presentors :) His research found that a diet high in fruits that contain large amonts of anti-oxidants, particularly blueberries, brought about increases in neuronal communication and motor behavior in rats with induced Parkinson's symptoms. Other fruits and vegetables that are high in antioxidants (and good for us) include strawberries, cranberries, plums, kale, spinach, Brussel sprouts, broccoli and beets. This is something our Parkinson's dietician Kathrynne Holden has also been advising us about for some time. PAN is currently working with Senators Cochran (MS) and Kennedy (MA) to obtain federal funding in the FY2004 Agriculture Appropriations bill for further "neutraceutical research" on Parkinson's and blueberries. more on Federal research programs and political action later Linda ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn