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Ivan and the list, I wish I had the answers to your questions. Like you Nancy and I have an unquencable thirst for quality information. We have been fighting this lowsey disease for 26 years. Whether these cells are the right cells, and of course the practical concerns about the actual positioning of the cells in the brain, the quantity to introduce, and how to engineer and regulate their domamine production are just some of the tough challenges ahead of the scientific community. In managing Nancy's disease progression we have tried to use the 5 stages of PD progression as the guide for which risks we were prepared to take. Each time she has reached stage 5 we have tried something dramatic. Fortunately we have never lost ground because of these dramatic decisions but we have not always gained ground either. Here are some of the examples. In 1989 in stage 5 we opted to try the adrenal transplant into the caudate nucleus. for weeks it looked like we had a winner and had returned to stage 1. Unfortunately the cells did not survive and all the benefits were lost with one exception.That was that we both came to realize that something as massive as that procedure which involved major abdominal surgery and major brain surgery could be survived with virtually no lasting side effects. In 1995 Nancy could no longer feed herself ( flailing limbs) and had become a risk to herself and also anybody trying to help her. The uncontrollable diskinesia not only resulted in bruises and broken jewelry on Nancy's body but on mine too as I tried to help and comfort her. We decided to have the Palidotomy surgery which as you know destroys brain tissue. Our decision was based on the fact that there was little to lose and much to gain. This time we got a complete winner as Nancy rose up from her bed in the intensive care unit one hour after surgery and took two victory laps around that unit with no tremors, no rigidity and no dyskinesia. It was our miracle and because we were the first in Houston, the media made a big production on the local news channels. Nancy returned to stage 1 and remained there for many years. Today she remains free of the diasabling dyskinesia, has only minor tremors but suffers from major rigidity, very bad stooped posture, the mental side effects of medication and always being tired. We are struggling with the decision about whether to wait for stem cell/fetal cell availablity or try DBS/STN. We read all that we can as we close in on this next major decision. As we struggle with these private and personal decision, my/our PLAN is to: Continue to support PAN in all of its advocay work because this will obviously take a lot of money. Federal support may be key to stem cell success. Encourage PAN and other groups to provide support and direction for the formation of state and local coalitions for grass roots advocacy at that level. Support focused PD research like the Micheal J. Fox Foundation is targeting and the Parkinson alliance seed money program. Encourage and support our local stem cell coalition in Houston which includes the Baylor College of Medicine, Methodist Hospital and the Children's Hospital of St. Lukes Support and encourage the merger of the National Parkinson's Groups in the U.S. (particularly NPF and PDF) and abroard and last but not least to support the Houston Area Parkinson Society's newly emerging strategic plan to create a Day Care Center which will assist the entire PD family in our local communities. Best Regards, Bob Bob Martone [log in to unmask] http://www.samlink.com/~bmartone ---------------------------------------------- Subject: Re: Stem Cell Availability List / 3 questions from a potential stem-cell patient On Thu, 8 Nov 2001 18:55:10 -0600 ROBERT A MARTONE <[log in to unmask]> writes: > U.S. Lists Stem Cell Availability for Researchers > Thu Nov 8 18:58:14 2001 GMT > > The labs include Atlanta-based Bresagen Inc.; San Diego-based CyThera Inc.; ES Cell International in Victoria, > Australia; Geron Inc. in Menlo Park, California; Goteborg University and the Karolinska Institute in Sweden; the > National Center for Biological Sciences/Tata Institute of Fundamental Research in Bangalore, India; Reliance Life > Sciences in Bombay (Mumbai), India; the University of California San Francisco; Technion University in Haifa, > Israel and the Wisconsin Alumni Research Foundation in Madison. Hi Bob, If a PWP wants to become a stem-cell patient at one of these laboratories, what are the first steps one must take? Do we patients have any means to evaluate which of the above laboratories should be selected to affilaite with, for research treatments? Are stem cells , once implanted, able to produce a controllable amount of usable dopamine? I am concerned that just as fetal cell transplants may have resulted in a few cases of unstoppable dyskinesias due to over-production of dopamine, which may have caused egregious harm to a few unfortunate patients, proliferating stem cells might cause similar harm by multiplying uncontrollably. Ivan :-) ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn