Wow. Amazing correspondence.

Dr. Levesque says "We are not opposed to embryonic stem cells for research
and cell therapy at all."

I wonder how he feels about how his work is represented by those who DO
oppose ESC research.

Kathleen

2009/2/21 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]
>
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