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Well done, Ray. Quoting rayilynlee <[log in to unmask]>: > Dr. Levesque: > > Thank you so much for taking the time to respond to my queries to Heather. I > especially appreciate your clarification of your position regarding embryonic > stem cell research as I certainly would not want to misrepresent your views > regarding this controversial issue which I was unaware of until now. The > fact that interests me is that Turner's PD returned about five years ago. > > I assume you are aware that opponents of ESCR, like Steven Ertelt, J. Wesley > Smith and David Prentice are using Turner's experience to make the case that > ESCR is unnecessary since ASCR is so successful. As late as 2007 Senator Sam > Brownback was presenting Turner as an example of an adult stem cell "cure". > I called Turner yesterday and he told me he was not doing well. Although his > reprieve is to be appreciated and your research should in no way be > trivialized, it is not a cure and people are being led to think it is by > these people and others on-line. I applaud your recent cautions that more > research is needed to validate Turner's temporary reversal of symptoms. But > I have a big argument with David Prentice's 60-80 adult stem cell "cure" > claims. > > I do have a couple more questions: > > How can the efficacy of the transplantation be accurately assessed if the > subject still takes PD meds and sometimes has a neurotransmitter turned on? > Even though as you explain Turner's DBS was not targeted for STN, doesn't it > still qualify as a treatment? DBS is now being targeted to areas of the brain > to alleviate clinical depression and epilepsy. Why does my DBS exclude me > from Phase II and Turner's was a part of his treatment package? > > It seems to me that Turner's PD symptoms returned at least five years ago. > His head was shaking in the 2004 video of his senate testimony. Why has the > peer evaluation taken so long? Why now? The fact that his PD returned is > never stated in the publicity surrounding Turner. What kind of difference > would it make if it was? > > DBS provides more than temporary reversal of tremor by stopping it cold, but > folks debate its pros and cons rationally, and nobody calls it a "cure" or > even a "successful treatment". Some people have had poor results with DBS > while others got their lives back. > > I just wish that all treatments for PD could be evaluated in the same way as > DBS without regard to politics or religion. As a Parkinson's prisoner, I > just want a cure and most of all the truth. I don't want any blocks on the > road to a cure. > > Rayilyn Brown > Director AZNPF > Arizona Chapter National Parkinson Foundation > [log in to unmask] > > > From: [log in to unmask] > Sent: Friday, February 20, 2009 1:40 PM > To: [log in to unmask] > Cc: [log in to unmask] ; [log in to unmask] ; [log in to unmask] > Subject: RE: Adult Stem Cell Treatment for Parkinson's > > > Dear Rayilyn, > > > > Thank you for your email and following our work. I would like to explain what > makes our recent publication important in view of our current research > efforts to treat Parkinson's disease. We did report on Mr Turner's initial > outcome in 2002, but this current peer-reviewed publication (attached) > presents the long term outcome (5 years post-op) and analyzes in detail > several aspects of our methodology and clinical outcom. Mr Turner's initial > harvesting was approved when a DBS electrode was inserted in the thalamus > back in 1998. This is not a subthalamic stimulator ( the STN as a target for > Parkinson's disease was only approved in 2003, I think). A phase II study > using the autologous neural stem cell approach was approved by the FDA in > 2001, but the sponsor of the study changed and the FDA came with new > regulations covering stem cell therapies (CFR21, part 210/211 and 1271). Our > study is approved but is on "clinical hold" until we meet their new criteria. > In addition, NeuroGeneration reacquired the technology and Phase II study in > 2005 and I will spare you the details of these additional delays. > > > > As for potential patient like you who have been implanted with a DBS device, > you would be excluded in the participation of the Phase II trial. We would > eventually like to open the study to out of protocols patients if the FDA > allows us to do so. > > > > I would also like to clarify my position as a scientist without any political > stance or affiliation. My team has worked with adult stem cells since 1996 > and have advanced significantly in the comprehension of normal central > nervous system development and in the pathophysiology of Parkinson's disease. > We are not opposed to embryonic stem cells for research and cell therapy at > all. If you read my testimony to the US senate, my position is quite clear. I > am not misrepresenting our findings, please do not misrepresent my position > if you do not know where I stand. > > > > I remain available for any additional comments or question you may have, > > Sincerely, > > Michel F. Levesque, MD > > > > From: Heather Larrabee > Sent: Friday, February 20, 2009 11:57 AM > To: [log in to unmask] > Subject: FW: Adult Stem Cell Treatment for Parkinson's > > > > Please respond. Thanks > > Heather > > > > From: rayilynlee [mailto:[log in to unmask]] > Sent: Monday, February 16, 2009 9:16 PM > To: Heather Larrabee > Subject: Adult Stem Cell Treatment for Parkinson's > > > > Heather: > > > > As a person with Parkinson's disease for 13 years and a director of the > Arizona Chapter of the National Parkinson Foundation, I have followed the > outcome of Dennis Turner's treatment with his own stem cells for 6 years. In > 2003 I contacted Dr. Levesque's office about the procedure and was steered to > DBS. In 2003 I had 2 DBSs by Dr. Thomas Waltz at Scripps La Jolla. I moved > from CA to AZ in late 2004. On March 24, 2006 I called Turner to ascertain > how he was doing. He told me his PD had returned with a vengeance. For some > reason Levesque's Phase II never took place. > > > > I was surprised to read today in the Bentham Open Stem Cell Journal about the > adult stem cell breakthrough by Levesque and he was hoping for FDA approval > of Phase II. What happened with Turner? I also understand that his stem > cell procedure was done with a DBS operation. Since I have had DBS would > that preclude my participation in a trial? > > > > Rayilyn Brown > Director AZNPF > Arizona Chapter National Parkinson Foundation > [log in to unmask] > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------- This mail sent through http://www.ukonline.net ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn