i would suggest to all who would like to stay current about treatments in...eww...modern medicine...lol, that you subscribe to this Smart Brief- you can skip over the stem cells if that research is not your thing...there is always something happening. They are a very very wealthy think tank.

One lady at faster cures told me they learned half of what they know from the PD community. Debi Brooks, co-founder MJFF had a big part in that.

FIona, thanks for writing to ask about forming questions and offering to help. From Fiona, i realized that when talking about BIO in another thread,asking you for questions for me to ask there, i assumed that everyone knew what that was. it's Biotechnology Industry Organization and its annual international conference is in San DIego - in two weeks. I'm reallly pushing it to go to that- its almost time for me to stop traveling unaccompanied. Carolyn was with me at the AAN in Chicago. She knows what happens when i go off and into dystonia. Absolutely worthless. How fun it was to check in to the airport in Chicago with dystonia.

If I did what I do now, for a career, I would have loved it. it is so much more exciting and right in the thick of democracy, archiving the dinosaur, and changing the entire face of medicine. i'm not being a drama queen here....dead serious! Grassroots are the basis.

Don't settle for donating you body parts and leaving your inheritance to charity. We need to be a part of the entire process. You can waste five years getting everyone ready for that process, or you can just dive right in with what you know. It
s more than anyone else i'll guarantee you. They still haven't quite gotten it - and think if we fill out our organ donation cards and participate in trials that's what we are basiclly worth in the process. Well have they been successfull thus far at anything?

ok i'll stop. I"m answering FIona here, and extending another invitation to send questions. Here are the topics, which reflect the overall plan and the language is changing rapidly.

• electronic records
• data sharing
• evidence based medicine
• subtypes
• accesss to experimental medicine - this is important for cancer, among so many others. Mass production of delivery systems are being produced right now.
• need a biomarker
• need a target
• private and public funding - see NIH move in this brief
• FDA hiring many more scientists, ethicists, getting better funding,Pipeline project has several distinguished FDA advisors for PD. Second after cancer to get that
• creating mutiple deliveries, looks like mass production, meaning many illnesses can be delivered treatment
• Genetics going online - 23 and me?
• clinical trials from home
• making clinical trials affordable. I read Todd Scherer from Mjff recently say, 'people can't afford clinical trials'.
• Alternative clinical trials. Focusing on the regulations needed to conduct them
• GINA legislation to protect electronic data
• Declaration of Clinical Trials Rights and Responsibilities

These are tense times. but we all know that.

thanks,
paula
http://www.smartbrief.com/servlet/wi...5-68d5f563614c

It is more than a little rediculus that we have no complete baseline for PWP. I would ask that someone fund a program to draw blood, take hair samples, toe nail clippings, etc from 10,000 parkies and run them through every lab test known and make the results available online. Do it through their neuro with stanrdized data on the patient. Cost would be nil.

Yes, I can without a doubt attest to how Paula and PD don't get along...MOST of the time.

In Chicago, we had to get on a bus to be taken to the Convention site...everyone had to do this...attendees were scattered around four hotels. Just getting on the bus someday was trail and error. And don't even ask me how we managed to get her to the airport the morning we left...yikes!

But alas, we made it and by the time we bought those Ben and Jerry ice cream cones she was up and walking on her own. Wow, the power of ice cream!!

Oh yes, now I remember what the issue was...she wanted to get to security without standing in line....ha ha ha...just kidding of course!

Paula - well, I thought about it a bunch, and hate to say it, but my head just isn't there for these issues right now - just thinking in a whole different kind of way. BUT please know that I totally support you personally in my heart for the tremendous healing energy you have, your sense of activism, and commitment to change through the channels you connect to. That sense of personal intention and integrity seems to me to be the most important thing, and I thank you and champion you for it...(is that a verb? hmmm)

Rick's thread about the art and education and creativity of medicine affected me greatly, and most of my thinking has been careening around those avenues. So I feel a little useless in thinking in more quantifiably pragmatic terms at this moment....but I'll look forward to hearing whatever you have to report, and who knows, I might get a burst of inspiration later...

I bet you were a sight at the airport, however your spirit and humour shines through your posting.

My 2 cents worth :

i) Clinical trials make up ... the prime example of the never ending trial is my old favourite Spheramine which has had a staggering four year phase ii trial (April 2003 to June 2007), and we won't hear anything until September 2008, five years before any news creeps out, (and at least the same to come for phase iii).

By now the first batch of Spheramine phase ii participants are five years down the track, why not set reporting dates for batches of patients at pre set times instead of only reporting all at the same time. If Spheramine didn't work surely we would have known this in 2005 !!

If it didn't work then the patients who had surgery in 2006/2007 were put through potentially life threatening, (possibly sham), surgery for nothing. If it did appear to work in 2005, by releasing this news more people will participate in the trial meaning quicker results, faster time to market.

ii) International co operation ... This is especially important in emerging areas (escr, gene therapy). We have at least 3 gene therapy trials running in Europe and the USA. Are any of the companies talking with each other. I am not that naïve that I cannot appreciate matters of commercial sensitivity and competition, however should this overseeing role be forced on patient interest groups, (e.g. MJFF). The same applies to retinal cell transplatation which it seems every man and his dog are performing.

Good luck Paula and always a pleasure to read your posts.

Neil.

in medicine is set to explode and we will all be surprised......just a little.....if this story on Drudge today is anything to go buy.

http://www.ajc.com/services/content/...xsvc=7&cxcat=9

Rick - The project with 23 and me is collecting swabs from your cheek. I guess that's a start?

Aftermathman - where have you been? Peg was one of the original 6 in the spheramine trial. She does feel that it helped her, and she only recieved one side. But soooo slow moving.

Howard - i do believe that you are an optimist! Always needed around here.

paula

A link to this is on the mjff site today...they sound pretty determined to do what it takes. For example, if the cells to a cure are in the nose [as lfac posted in another thread] - the FDA isn't going to just say ok fine carry on. This process must be shortened if we are ever going to just stop and treat to see what happens.

Most pD drugs are halted.

http://www.fastercures.org/objects/p...ion_052808.pdf

paula

easy to lose it if we did not share some optimism Paula. This Headline and article produces another injection of optimism. We know Ceregen www.ceregene.com and Neurologix www.neurologix.net are already underway or about to proceed with their respective phase two trials.

Gene Therapy About to Explode over next five years. Check this out...


http://www.stemcellresearchnews.com/...earch_news.htm

I am very bullish on gene therapy for Parkinson's and believe that this is the area that will yield the most impressive treatments in the relatively near future. Because of the idiocy of the Bush administration and their cronies stem cell research has been set back by at least 8 years.

However, gene therapy (probably because of the lack of progress in the stem cell area) has advanced pretty quickly in the past several years. Ceregene late last year completed enrollment into their Phase II trial of CERE-120. The results for this trial should be reported in Q4 of 2008. (Let's all hope that this Phase II trial looks as good or better than the Phase I trial which looked quite good.)

I am a pharma researcher (in a different therapeutic area) with a wife who had Parkinson's diagnosed 5 years ago. If the Phase II Ceregene trial looks good, the FDA could choose to Fast Track this drug (almost a certainty that they would). Were the pieces to fall into place we could have a treatment on the market in the range of 2010 or 2011.

We need to all watch how these gene therapies progress and push Congress and the FDA the try and make these treatments available as soon as is reasonably possible.

If there is demonstrable efficacy of Ceregene's treatment or Neurologix's approach or the others, the major concern of the FDA would be around long-term safety issues. This is a reasonable concern. However, some of the initial patients in Phase I of Ceregene's trials are now about (I believe) 5 years post treatment. As far as I know there have not been reported serious adverse events over this periods. The Titan Spheramine trial has patients who are now about 6 years post. Although Spheramine is not a gene therapy per se it has enough similarities to feel some optimism about this as well.

The most feared long term adverse event would be some type of brain cancer, with cells continuing to divide and getting out of control. This is not something that has been reported to my knowledge so far. It would not be reasonable to prevent those with PD from getting such an effective treatment because you are continuing to wait to see if someone develops a brain cancer 7-10 years out. It makes no sense to do so.

If anyone on this list was a participant in Ceregene's Phase I trial and could indicate how she or he is doing at this point, I think all of us would be interested.

Thanks to all,

NYBoy