Do we want a cure, or would we rather just discuss pD amongst ourselves, with this weeks hot candidate.
We occasionally come across a promising candidate. Do we pounce on it and push for further work. No, we let it run for a while then bury it in concrete.
I can't think of any advance that we have pushed along.
One such candidate is the latest on the BBB story, see

Research finds way to restore BBB in Parkinsons's and MS

London University has virtually confirmed the theory. So why are we not hares instead of slow white rabbits!!
I only want to see a cure while I am still here, to free sufferers of their permanent misery. Too late for me at 76. When will it be too late for you? No doubt there are other examples that we let slip through our fingers. We need more white campaigners!

Ron

.

Holy cow! I did not know this: just Googled now that you mention it:

Research opens up possibility of therapies to restore blood-brain barrier

Wednesday 2 January 2013

Research led by Queen Mary, University of London, has opened up the possibility that drug therapies may one day be able to restore the integrity of the blood-brain barrier, potentially slowing or even reversing the progression of diseases like multiple sclerosis (MS). The study, funded by the Wellcome Trust, is published in Proceedings of the National Academy of Sciences....

Ron, your impatience is exactly true. I don't know what we can do about it, but for sure it is time to get impatient. There are at least a thousand studies on PD published every year, and most do not focus on a clear and present opportunity. If London had solved the BBB problem, we are off to the races. How can we put on pressure to have less research into our compulsive sex lives, and more into just having our lives at all? How can we get that BBB research made into a priority?

e-mail sent:
Research opens up possibility of therapies to restore blood-brain barrier

Katrina Coutts
Public Relations Manager
Queen Mary, University of London
email: k.coutts@qmul.ac.uk

Dear Katrina,

One of our numerous members in the U.K. has started a thread on our Parkinson's Forum to discuss recent research at the University of London. The thread is located at: http://neurotalk.psychcentral.com/thread184739.html

Members our group will have questions. And if it looks as good as it seems, we can on our side spread the word among People With Parkinson's that there is some positive research that we want to encourage and speed up. Time is not on our side. Perhaps one or more of the people involved in this research could join our discussion. answer questions, avoid speculation, and we, who have Parkinson's, could cheer-lead for a victory over this and other brain and neuro diseases, and provide insight into patients' reactions and hopes and concerns.
Bob Dawson (speaking just for myself).

imho there would be less talk, more results if more pd'ers would volunteer fior trials, etc. even painless genetic testing/disease monitoring trials.
i've read 30% of trials never occur thru lack of volunteers and 80% are seriously delayed.

as far as finding a disease altering treatment, ceregene's results expected in march/april, they are initiating fetal brain cell transplants in europe, there's a porcine implant trial just started in new zealand, other gene therapy trials in progress/planned, etc.

i suggest checking the mjff blog daily.

Certainly, more individuals should volunteer for trials.
But the Forum is about lots of talk, not less talk, so it matters that we not talk only to each other ("preaching to the choir") but to people outside our circle as well; and that researchers start to hear patients' voices,
I hope the ceregene trials and the N.Z. trials go well, but that should not prevent us from cheering on a team that seems to think they can overcome the brain barrier.
I don't check MJFox every day, but when I do, I often come here to talk about it, and Debi posts here. MJF is a big org., not chatty like here; so I make more talk here, not less.

i have just the opposite opinion as far as encouraging research, science is advancing so rapidly that lay people's efforts are best utilized supporting the MJFF and joining pd advocate organizations, i certainly wouldn't try to advocate my legislatures on one very narrow area of basic research based on something i read on the internet but that's just me. with the advent of the internet, we are bombarded with new research daily, i for one can't tell how much is just self promotion by the research group or just wanting to tell other researchers what they are doing and what is serious research. i wouldn't know what team to cheer on nowadays with all the hype that goes on so personally, i'd rather channel my efforts via an organization with a board of directors that hires experts to pick and choose the winners/losers. now there are obviously cases where a promising technology falls thru the cracks.

i suggested the mjff blog as a way of keeping informed, it isn't a social blog.


but your're absolutely right, this is a place to chat/share for pd'ers and serves an important function.

This Forum is a pd advocate organization.
I don't want to have a hole drilled in my skull just yet.
If the University of London thinks they can solve the blood brain barrier dilemma, I want to hear about it, and react to it, so at least the researchers hear a reaction of some sort from people who have the disease. They, too, must wonder where we all are. You work 5 years on the blood barrier that kills us, hold a press conference, and there is nobody around who has Parkinson's. Me, at least, I am going to High 5 them.

Is this the paper we are talking about:

"Identification of an essential endogenous regulator of blood–brain barrier integrity, and its pathological and therapeutic implications"
PNAS, December, 2012
Enrico Cristantea,1, Simon McArthura,1, Claudio Mauroa, Elisa Maggiolia, Ignacio A. Romerob, Marzena Wylezinska-Arridgec, Pierre O. Couraudd, Jordi Lopez-Tremoledac, Helen C. Christiane, Babette B. Wekslerf, Andrea Malaspinag,h, and Egle Solitoa,2

http://www.pnas.org/content/early/20...09362110.short

I can't get access to the whole paper, but:

"Abstract:...We thus propose ANXA1 as a critical physiological regulator of BBB integrity and suggest it may have utility in the treatment of MS, correcting BBB function and hence ameliorating disease."

Nice graphic: http://www.pnas.org/content/110/3/799/F2.expansion.html

I can see why this is important for Parkinson's, but I can't see anything about Parkinson's trials, nor see an obvious DIY translation.

Am I missing something?

Ron, what is it that you want us to do?

John

Hi johnt,
sorry, had a serious fault on my computer and have been down for a week.
Also lost lot of data. I will find the paper again and let you have it.
Thanks for your input.
Ron

Thanks for flagging this work. We hadn't seen it yet. We did a quick pubmed search and pdgene search and don’t see any obvious links between ANXA1 and PD…‘annexins’ as a general class of molecule seem to pop up occasionally in PD papers around general inflammation mechanisms (mostly because some of these molecules act as markers of immune cells) but not as a BBB specific cause of PD. On the one hand, one could imagine targeting this molecule to open up the BBB for drug delivery but the safety aspects would be huge given it could obviously lead to neuroinflamamtion. So, while relevance for MS is interesting, not so clear for PD.

Debi