The 'networking' of the Parkinsn list in cooperation with the national organizations produced an excellent turnout for the March 7th Symposium. At many locations 'undocumented' newcomers outnumbered the support group attendees. This is great news! Local group produced news stories, which put the name Parkinson's on the minds of many who had never thought of it and brought in those who have it and may have thought that they were alone. While the Symposium produced little new news for list members, we are on the 'cutting edge' here, the 'new' news brought new hope to the newcomers. Who were the sponsors? Somerset Pharmaceuticals, of which, Sandoz Pharmaceuticals is a part, paid for the production. Those in the U.S. who take Eldepryl indirectly paid with their $60 to $120 a month Eldepryl prescription cost, as well as taxpayers because it was a business expense. We're not complaining....just stating the facts. Drs. William Tatton, of Dalhousie University, presented the laboratory case for deprenyl (selegiline, Eldepryl) and "Rocky Balboa", Warren Olanow of Mt. Sinai, presented the clinical case. Dr. Dee Silver, of San Diego, California, moderated the presentation and briefly presented the 'Algorithm'. A PhD, Dr. Kordower from Rush-Presbyterian in Chicago provided the new news. Drs. Lang in Toronto, Canada and Goetz at Rush-Presbyterian will start a Phase 1 clinical trial using Glial Derived Neurotropic Factor. Phase 1 trials help determine safety and if there is any, efficacy. These will start later this year. Dr. Kordower also presented a case of Dr. Olanow's, Patient 1 of a fetal transplantation procedure. It was previously presented at the AAN convention last year but this is the first time, that I know of, that any patient groups have seen this data. Patient 1 was followed-up on until his unfortunate death from complications of an ankle surgery. At autopsy, the success of the procedure was verified. The details of the case were: Pre-operatively Patient 1 exhibited the following symptoms and history: Patient 1 Fifty-Nine year old male Eight year history of PD with tremor, rigidity, bradykinesia, and gait disturbance Motor fluctuations, dyskinesias, and dystonia which could not be satisfactorily controlled by drug management 1700/170 mg levodopa/carbidopa/day First operation: 2/93; right side-four donors Second operation 3/93; left side-three donors Cyclosporin initiated 3 weeks prior to 1st surgery and discontinued 6 months after the second operation Modified CAPIT protocol PET scans at baseline, 6 months and 12 months Patient died 8/94 from a massive pulmonary embolism secondary to recovery from ankle surgery. Patient 1 "Off Time" Percentage of "Off" time when meds were working Baseline 50% 1 month 17% 3 months 13% 6 months 03% 9 months 03% 15 months 01% *** Editors Note # 2 ******************************** Dr. Kordower did not mention whether levodopa dosage or frequency of dosage was modified post-operatively in this patient which could have contributed to the decrease in "off" time. ****************************************************** Patient 1: Dyskinesias % time with dyskinesias during 'on' when meds were working Baseline 20% 1 month 07% 3 months 04% 6 months 01% 9 months 01% 15 months 01% *** See Editors Note # 2 ***************************** Patient 1: UPDRS "Off" Total Score: Tested when meds had been withheld for a period of time Baseline 80 1 month 50 3 months 55 6 months 58 9 months 56 15 months 50 PET Scans Pregraft transplants clearly visible 6 months transplants were producing more dopamine 12 months transplants were sprouting and increasing in area and intensity of dopamine production. At autopsy, there is no evidence that the Parkinson's disease process is damaging the implanted cells and over 200,000 of the implanted cells had survived. Stain test on autopsied brain showed that over an 18 month period, the implants had completely innervated the surrounding areas of the brain. WHAT PATIENT ONE TEACHES US Robust survival of grafted fetal nigral neurons can be achieved in humans. Grafted fetal nigral neurons can provide extensive dopaminergic innervation to the parkinsonian striatums. Clinical recovery is associated with graft survival and not the sprouting of host systems. Enhanced levodopa uptake in PET scans following transplantation is associated with graft survival and not improving of host dopaminergic systems. *** Editors Note # 3 *********************************** The abstract of this case is in the parkinsn archives. It was presented at the AAN annual convention in the Spring of 1995. Dr. Kordower's presentation here with the details is truly encouraging. To receive the AAN abstracts, send a message to: [log in to unmask] In the body of the message paste only the following: //DBlook JOB Echo=No Database Search DD=Rules //Rules DD * select * in parkinsn print all 2756 ********************************************** Mt. Sinai, as well as Dalhousie Medical Center in Nova Scotia are doing clinical trials on fetal transplantation. Congressional enactment banning fetal cell procedures may force folks to seek them in Canada. This congressional mistake, as far as Parkinson's research is concerned, must be made right at the ballot box in November. If you are not political now...use this as an incentive to be so. THOUGHTS ON FUTURE SYPMOSIUMS Any pharmaceutical company desiring a patient audience, should recognize that 30 days is not enough time for local groups to plan a successful meeting. Some groups did not receive local publicity because by the time the word was out, here and in the associations, and the delay getting the handbooks, not enough time was permitted for local outlets to schedule us in their articles or programs. We barely had time set up sites, let alone publicize it. The sponsor and the PR company need to share that responsibility for not doing prior planning. If, as was the case this year, a physicians conference is scheduled the same day, The sponsor even though they use a different PR organization need to include the Parkinsn list in their publicity. Many hospital sites learned of the physicians conference from their hospital satellite coordinator that another conference was scheduled that day. Somerset, the desire to 'compartmentalize' or hold another 'secret' conference that could be of benefit to a multi-faceted group like Parkinsn, does not make 'happy campers'. The "Neuroprotective Story: From petri dish to clinic, is becoming rather worn. Commercials by the sponsor through out a symposium would be better than restating a hypothesis that hasn't fully made the transition from the pretri dish to the clinic. Eldepryl does have its place in the treatment of early Parkinson's disease but its continued use in hopes of some neuroprotective mechanism in more advanced patients is in question. Patients are spending $60 to $120 a month on this possibility. Terminology used in a patient/caregiver type symposium should be understandable. In the neurosciences poly-syllable words are the jargon of the art. We need presenters that can simplify explanations so that we can understand the concepts. Lastly, but not leastly, future sponsors and promoters of symposiums should realize that the parkinsn list can be an ally along with the national organizations. While there are those among us who are in the 'business' of Parkinson's, the majority of us are volunteers who contribute their own time and resources in our efforts. Any future programs should note the contributions made by the parkinsn list in the program credits. Somerset and their PR agency are very silent on this matter. Thanks to all the list members who participated in the Symposium preparation and established sites in their hospital, community, support group or home. The site list was very extensive this year. Our success and participation this year helped remove the bad memories of being 'locked out' of last years symposium. Let's pray that this new spirit of cooperation between the national organizations carrys over into other areas also. John Cottingham "The parkinsn list brings Knowledge, Comfort, Hope, and Homeboy Friendship to the parkinsonian world." LibraryH Parkinson's Chat on the Undernet 8:30 PM CST -6 Daily. If you access the Internet through a provider with a [log in to unmask] PPP/SLIP account, free IRC chat software is available. WFD