US PARKYS ,IF WE CONTRACT/ FUND DR GILLS GDNF PROJECT PRIVATELY AS COMPANY OURSELVES as owners CAN WE CONTROL USE NOW

[professor]

APOST BY JOHN PEPPER/GREY (FORUM MEMBERS)IS SURE THIS GDNF PROJECT, HAS WORKED WILL WORK ,WAS SEEKING FUNDING FOR FINAL STAGE,. APPARENTLY ITS THEE DOGZ BOLLOCKS ,,,, I F WE WERE TO OWN IT PRIVATELY AS A COMPANY WE CONTROL ITS, SALES DONT KNOW LEGALLY WHAT IS NEEDED BUT IT WOULD PERHAPS ALLOW PRODUCT TO BE USED AT OUR OWN RISK , STRAIGHT OUT THE OVEN LIKE NOW ,LETS NOT WAIT ANY LONGER

[JohnPepper]

I don't think it is that simple! According to a news video on Sky News over the weekend, Dr Stephen Gill is looking for a certain number of patients willing to take part in the next trial. He was not seeking financial backing.

If the trial is successful, then according to the pundits, it will still take several years before it has been able to jump through the hoops and satisfy the "Powers that be" that the GDNF actually works. Then the big question will be: "How much will it cost to receive the treatment?" Going by the cost of the DBS, it will be very prohibitive.

[Lindylanka]

All drugs have to go through a rigorous trials procedure in which there are many stages, first with animals and then with humans. Dr Gill's current trial has been for safety, and the one that is calling for recruitment will be fore efficacy. There are other stages beyond that, and it is estimated that if successful this treatment will take between 5-10 years to get to market. I do not think that these stages can be bypassed, or that it is advisable. If the trial were supported well financially it would not mean that it was 'owned'. It is not about ownership, it is about safety and accountability, as well as the ability to create a universally available treatment. As someone with PD I too would like a treatment that would make me better, but understand that my personal sense of urgency is secondary to the need to have treatments that are thoroughly tested. It is likely that this treatment anyway will be extremely expensive, and in the years to come while it is being tested I would think there will also be efforts made to find ways to deliver it that are more affordable. Already the delivery system is so much more advanced than previous versions, that I think this will be an on-goiing challenge.

[grey]

After the 2010 World Parkinson's Congress in Glasgow, I wrote:

"Am I filled with hope? Alas no.I discovered the wheels of medicine grind slower than I feared.

An example - a group played by real people play acted their role in the life of a new drug from point of discovery to when first available to patient. On stage were a politician, neurologist, pharma, approval authorities (plural), patient organisation and a very pushy patient (Tom Isaac playing himself?). It managed to amuse and anger.

It turns out that from point of discovery of a new medication to the pill finally being released to our well informed, eager patient, prescribed by his progressive neurologist, 13.5 years have elapsed. I'm late 50's; at that rate I will be early 70's before I can hope to benefit from today's discoveries.

The discussion following pointed out the obvious; the processes are carried out in strict order, one after the other, whereas there is scope to run some processes at the same time. This was said to be under consideration; for example, the approval processes running in parallel. Even better, involve the approval guys at an earlier stage in trials. I question why this hasn't happened already. For our sakes, do it, don't discuss it. Take a lead from industry; you wouldn't survive a day if you ran a business like that.

Consider for a moment the cast. This was not a cynical play put on by rebellious patients. There is a strong message from these guys that this is unacceptable. They could do better for us.

I know that safeguards are there to protect us, that is good. But delay in bringing effective treatments to patients prolongs our suffering thereby increasing it, that is bad. It's a balance. Who decides the correct balance? What say has the patient?

Several speakers talked of engaging the patient. I feel we are being sent a message here, a message we should listen to."

Three years on, has anything changed?

[PatV]

it's way too long. hey, it's the 21st century. we roll out iphone updates every other week!

[grey in reply to PatV]

A brain is slightly more complex than a phone..... but if the cash Apple generate from the people with the brain capacity of a "smart" phone could be diverted to PD research then .........

[professor in reply to grey]

grey

you are without doubt the forums ambassador and very knowledgeable,,,in PD,,,, but we don't have to be helpless waiting waiting on them deciding its ok when they feel like it

HIDING BEHIND APPROVAL COMMITEE CRAPP STALL STALL

WE

need to stand tagetha form an action commitee

,, your ability walks ahead of you.....however a cure or an effective treatment they said would take 10 years 20 years ago . why dont forum members raise a petition see if we can expedite the treatment..a definition

PD IS a condition created BY shortage OF A BODY FLUID CALLED dopamine . THE SHORTAGE WORSENS WITH TIME

cuases TRAUMA DIET LIFESTYLE LACK OF SLEEP TOXINS

this shortage makes a PARKY UNABLE TO ACTION FINE MOVEMENT CONTROL

ASUCCESSFULL TREATMENT GDNF

REINSTATES SUPPLY IS TESTED ANDWORKS

PERHAPS SIGNING A DISCLAIMER MAYBE ALL THATS NEEDED TO ALLOW ISSUE

I WOULD GIVE IT A GO

it makes me angry when hope is withi n our grasp and research is on a pleasure cruise we don't need to kiss their arse.form a committee START DOIN SUMTHIN ABOURRIT

[Hikoi in reply to professor]

Professor you seem to have the energy and drive and ideas about the issues that need addressing. Time for action as you say, so you are well placed to followup your suggestions, forming a committee and beginning the process. What do you say?

[professor in reply to Hikoi]

WELL I THINK THERE IS AN OPPORTUNITY

AND I WOULD BE PLEASED TO ASSSIST BUT NEED SOME GENERALS WHAT ABOUT YOU N GREY AND I NEED BALDERDASH,WE NEED TO DO THINGS PROPERLY MAKE SURE LEGALLY WE CAN CREATE THIS COMMITEE

[grey in reply to professor]

Well thanks Prof for the accolades, totally undeserved I assure you. My knowledge is as deep as the skin on the rice pudding of ignorance.

I'm too off at the moment to type much and plan to be with my daughter most ofthe day, but I will try and respond to the committee idea later on.

[soup]

I think there is some mileage in exploring drugs used in other illnesses for their efficacy in Parkinson's. Some statins, a diabetes drug and a blood pressure drug are all being investigated currently, and I suspect there are many more I don't know about. These drugs will have had their safety evaluated and it's just their anti-Parkinson's effectiveness being studied now. Much quicker and it will give the drugs companies an incentive to invest.

[grey in reply to soup]

The cost savings must be enormous - the drug is already developed and safe. That should shave years off the development cycle. Jump straight into phase 2 clinical trials.

Do drug companies investigate alternate uses routinely?

[Hikoi]

One current initiative to shorten the time frame by identifying drugs already approved.

cureparkinsons.org.uk/roper

[soup]

Also Parkinson's UK is working with researchers, looking at 'repositioning' established drugs.

parkinsons.org.uk/news/24-j...

parkinsons.org.uk/news/3-se...

I'm not sure who comes up with the idea for using drugs in novel settings but I suspect that as more is understood about Parkinson's at the cellular level, drugs whose actions have been well documented in different circumstances will fit in to the jig saw. That's why we need researchers who keep all manner of ideas in the air. You never know where the next breakthrough will come.

[Hikoi in reply to soup]

See also the Linked Clinical Trials initiative

cureparkinsons.org.uk/linke...

"Finding new therapies for Parkinson’s disease (PD) is a slow process. We (CPT) assembled an international committee of experts to examine drugs potentially suitable for repurposing to modify PD progression. This committee evaluated multiple drugs currently used, or being developed, in other therapeutic areas, as well as considering several natural, non-pharmaceutical compounds. The committee prioritized which of these putative treatments were most suited to move immediately into pilot clinical trials. Aspects considered included known modes of action, safety, blood-brain-barrier penetration, preclinical data in animal models of PD and the possibility to monitor target engagement in the brain. Of the 26 potential interventions, 10 were considered worth moving forward into small, parallel ‘learning’ clinical trials in PD patients. These trials could be funded in a multitude of ways through support from industry, research

grants and directed philanthropic donations. The committee-

based approach to select the candidate compounds might help rapidly identify new potential PD treatment strategies for use in clinical trials."

Also yet more info and links on the Exanatide research which looks hopeful

cureparkinsons.org.uk/News/...

[professor]

yes.they all talk a good game no onever says when A NEW DRUG will be available more money is pumped into the PD research , than a cow can shite and quite frankly, THEY WORK WITHOUT PRESSURE, DEADLINE ,OR SHOP ORDER

IT CANT GO ON

SHORTAGE OF DOPAMINE IS PROBLEM WHY THERS A SHORTAGEIS ACADEMIC

SEE MY SLEEP THEORY, IT HAS POSSIBLE ANSWERS IF YU NEED ANSWERS

ITS REALLY SIMPLE REINSTATE DOPAMINE SUPPPLY BY FIRST REMOVING DEAD CELLS,, WHACK IN NEW CELLS THEN NO BOTHER WITH DISKINESEA WHICHHAS RESULTED FROM NOT CLEARING OUTOLD CELLS

CELLS THAT DONT WORK DRAG DOWN THE WORKING CELLS, WHICH THEN ARE AFFECTED AND DRAG DOWN ANOTHER, LIKE 1 BAD APPLE IN THE BARRELL, WHY THE APPLES BAD IS ACADEMIC, THAT 1 BAD APPLE CAUSES A PONDEROSA EFFECT . UNTIL ALL THE APPLES ARE USELESS

PARKINSONS YUR NOT DEAD , YOU ONLY LOOK IT

WAKE UP SMELL THE COFFEE

[soup]

Not as easy as it sounds I'm afraid Professor. Taking out all the affected cells the would involve more than just the dopamine producing cells in the brain. There are mis-folded proteins in nerve cells throughout the body including the gut. In Montreal it became quite clear that mis-folded proteins can somehow cause other cells to develop mis-folding, probably by acting as a template.

So, if I understand your theory you would have to remove all the cells to stop the new cell transplants becoming affected. Either that or

i) stop the mis-folded templates traveling to new cells

ii) stop the new cells absorbing the mis-folded proteins from the already damaged cells

iii) find out why the cells can't clear the mis-folded proteins in people with Parkinson's

iv) find out why the cell can't function properly with the mis-folded protein in it and give it a boost in some way

Research is being carried out into all these areas.

[honeycombe3]

At the risk of diverting this discussion I have cut & pasted part of my answer to another question. Assuming we are prepared to put our money where our mouth is (forgive the pun):

Re being prepared to put our lives on the line to trial new products/ procedures without going through the procedural hoops - there are ethical as well as practical considerations. Recently Maurice Saatchi's wife died & he started a campaign to address these issues - if one has little or nothing to lose & is prepared to take a calculated, informed risk, should they be denied this right? should procedures/treatments approved for one condition be allowed use with informed consent without the surgeons/medics being prevented from doing so by their employers for fear of legal action? Nothing is black & white but don't let that stop people volunteering!