Fundraising for PD Research
 

I have checked with the Moderator that it is OK to post this.
We know the cost of research, and the more speculative or novel, the more difficult it is to get funding. I am involved with a research team in King;s College London, and raised £16,000 for them by organising an auction.
They are doing ground breaking work on the role of infection in PD, and need much more to complete their work. A student, James Bowthorpe, is doing voluntary work with them until he starts his doctors degree in September. He has decided to raise the £1.8m they ned by cycling round the world, to beat the present record of 195 days, by 45 days!!!
He will do 120 miles every day for 5 months.
He will cross Europe, Iran, Pakistan, India, Malaysia, Singapore, Thailand, Australia, New Zealand, USA and Canada, to name but a few. He will cover 18,000 miles.
You can read all about it, at
http://www.globecycle.org/
You will be able to follow his progress, and see his detailed route. He leaves London on 29th March. Please support him in whatever way you can,
If his route passes near you, greet him and cheer him on. Publicise his ride in your area. Direct any rich friends to
http://www.justgiving.com/globecycle

This is a serious attemot on the World Record. James has already crossed the Himalayas by bike, and cycled from the Artic to California.
And a nicer chap you could not wish to meet. He is doing this for us.
Ron

A cure?
 

This doesn't seem to have raised much interest, (only 26 views & no replies), so I have done a bad job of describing it. Maybe people don't realise the promise it holds.
Have a look at the video in the link below. It shows a patient before treatment, with a typical PD gait. Then it shows her at several stages after treatment. You will note she walks perfectly after one year, without
medication.
This research is on a novel theory, and consequently has trouble getting funding. Yet it is over 40 years since L-dopa therapy, and despite more than $100m+?? on research, we don't have a lot to show for it. Stavelo, mix 2 known ingredients together to save taking them separately...rocket science eh. Compare this with the video evidence below.

http://www.whatsdrivingparkinsons.ne...ntdiaries.html

Go to the home page, and read some of the links.
Above all, have a look at the World Record attempt by James, in the links in the first post. This man is in his 20's, he should be enjoying a packed social life. Instead, he is cycling 120 miles per day for 5 months, to raise funds for our research. He is doing it the hard way, no support vehicle, he is on his own, carrying all he needs himself. Through countries like Iran and Pakistan, although he could get mugged just as easily in UK or USA. Think of the organisation, where does he sleep at night, how does he protect his belongings at night, which countries need visas, clean clothes? How does he cope carrying money and dozens of currencies.
He is doing this for us, having seen patients improve and being totally frustrated that funding is not available to innovative thinkers, rather than those scientists following well worn pathways that tend to get the funds.
Ron

Ron,
Thank you, its impressive both the video and what James is doing. I will send this info to my friends.

Girija

Views are great Ron. Non members who read the forum count as views. So do the bots. That means your post will end up showing up on searches. :)

The Thank You button is a great way to let someone know you read their post, when you aren't able or don't have time to reply.

Fund Raising
 

[QUOTE=Ronhutton;456666]This doesn't seem to have raised much interest, (only 26 views & no replies), so I have done a bad job of describing it. Maybe people don't realise the promise it holds.
Have a look at the video in the link below. It shows a patient before treatment, with a typical PD gait. Then it shows her at several stages after treatment. You will note she walks perfectly after one year, without
medication.
This research is on a novel theory, and consequently has trouble getting funding. Yet it is over 40 years since L-dopa therapy, and despite more than $100m+?? on research, we don't have a lot to show for it. Stavelo, mix 2 known ingredients together to save taking them separately...rocket science eh. Compare this with the video evidence below.

http://www.whatsdrivingparkinsons.ne...ntdiaries.html

He is doing this for us, having seen patients improve and being totally frustrated that funding is not available to innovative thinkers, rather than those scientists following well worn pathways that tend to get the funds.

Ron: Thanks for your post. I will appreciate your reminding us of dates and routes to be traveled in the U.S. If his journey comes anywhere close to the Dallas/Fort Worth TX metroplex I will attempt to get the local media involved. One small step ..... Bob C AKA Bandido1

Ron...
 

great you are working with researchers, however the fact that the UK can flush billions away on banks, tax cuts etc but not support medical research for a fraction of the sum is a real statement of British politics today.

I don't understand the research, if it says PD is a result of another condition, I feel fine, (apart from PD). To my knowledge I am healthy.

Do I misunderstand the research ?

Neil.

p.s. Good luck with the fund raising.

Research
 

Hi Neil,
You really need to read the links on the research to understand it.#
See R John Dobbs, Sylvia M Dobbs, Clive Weller, André Charlett, Ingvar T Bjarnason et al. Helicobacter 2008;13:309-22.
We know any infection gives us problems, and this team believes that the gut bacteria Helicobacter Pilori in particular gives off toxins which enter the brain. Many people have HP and don't have PD but the team believe there are genetic reasons why the HP gives some PD and not others.
I believe it is those with a genetically leaky BBB who get PD from HP.
You can have HP infection and still feel fine. There are special tests to determine whether you have it or not, you can't diagnose it by how you feel.
I have seen quite a few miraculous improvements in patients who have had the HP erradicated. Have a look at the video on the website.
http://www.whatsdrivingparkinsons.ne...ntdiaries.html
It is typical of what is being achieved.
Regarding funding, most cvountries are flushing billions away on banks etc. What research funding there is tends to be awarded to "safe" run of the mill well worn projects, whilst innovative radical thinking tends not to get the funds.

Ron

Ron ...
 

please do not answer if you feel this is too personal a question and I don't mean to offend you.

As a pwp have you been tested for Helicobacter Pilori and if so, what were the results ?

Neil.

No Luck Linking
 

Ron - this is very interesting, but I can't get the link to work. Is there a problem with the link or with my machine? Thanks a bunch!

H.pylori
 

Neil,

H.pylori infections are shown to be associated with PD, heart diseases (atherosclerosis), cancers and diabetes. Medline search shows atleast 10000 papers, suggestive of H.pylori infection as one of the factors for many diseases.
The group I was working with in London and Bangalore were developing a vaccine for H.pylori as a therapeutic for atherosclerosis and tested it in mice. Early data was disappointing as the vaccine didnt do much to prevent atherosclerosis.
Like Ron said, many genetic factors might be involved which were not tested and are being considered now.
What we came up as a hypothesis to explain the data and the connection between atherosclerosis and HP (might be true for other diseases too,) is as follows:

Genetic factors/carcinogens/radiation initiate DNA damage and environmental factors, chronic infections induce inflammation. Body gets stressed, stress factors increase, more inflammation, blood vessels become sticky, cells and lipds stick to the vessels......... clogged blood vessels and heart attacks. Experiments are ongoing to test this theory.

In addition to HP, many other similar bacteria (oral pathogens) and viruses (CMV) are shown to be associated with heart diseases. My bias is that its not the organism per se, but the inflammation and the types of inflammatory substances released are responsible for promoting a disease. But there are others who think differently, thats science I guess!

By the way, I was positive for HP and have PD, tried antibiotics, didnt do much for PD, but cleared HP. But it might have helped in slowing down PD.
Who knows! The bottom line is whatever works and makes my symptoms go away matters to me now, scientific curiosity comes later!!

Girija

Girija and Ron ...
 

Thank you Girija, I never fail to be amazed at the bank of knowledge we have on Braintalk2.

Don't take this the wrong way but sometimes I look at the research going on and its nature highlights how little we know of PD. Still we don't know why DBS works but the important thing is it does.

I don't understand, treating hp seems everyday with antibiotics, I assume testing for hp is simple, why not get 20 parkies in a room and test and treat hp, see what happens, heck i would be one, even pay for it myself if necessary.

Ron, is this not an option for your group ?

Neil.

HP
 

Neil,
What you suggest is what the research team is doing. They check every patient for HP and give antibiotics and monitor symptoms. As I said, I have seen a number of patients who have stopped medication and have lost all symptoms. Did you look at the video? However, remember you can have infections of many sorts not just HP. If your PD is due to another infection, it has to be identified and erradicated.
Yes I was tested for HP,and initially tested negative. However, the research team did not believe I wasn't infected and tried a much more sensitive test. Sure enough I was infected. When they erradicated it, I was able to reduce my sinemet to 150 to 200mg L-dopa after 18 years of PD. I still have symptoms, and this means I have other infections. The team think I have SIBO, small intestinebacterial overgrowth. It is complicated and I am not saying this is a cure or the whole story. But they are clearly on to at least part of the cause. They need those funds to take it a quantum step nearer. I am working full time on the computer contacting companies for donations.
Ron

Sasha,
Sorry try
http://www.whatsdrivingparkinsons.net/
and click on diaries.

Thanks Ron ...
 

and I am happy to be a guinea pig if you want another.

Good luck.
Neil.

this is where i got on the bus i think
 

seems ages ago, but ron and i started wrestling with the h. pylori angle in the old BT days. I will add some ideas (of others) as to why such a small creature might cause such grief. as girija mentioned, inflammation is at the core.

a fetus exposed to the bacterial wastes from a maternal infection during critical times of development can develop hypersensitivity to later (post-puberty) exposure to similar wastes (particularly a toxin called LPS).

The same fetus may also be exposed to maternal stress hormones as a result of her experiences during pregnancy. Again it must occur during the right stage of development to be relevant. As a result of this, the control circuitry of the future adult's stress system (the HPA) is not quite normal.

Notice that we already have a string of variables (i.e. there MUST be infection AT the right time AND stress AT the right time etc....) This is important because it explains why PD can be widespread and yet not even more common.

LPS is very common because a huge family of bacteria (called "Gram negative) leave it behind when they die. In fact, it is so common that our immune systems monitor its level as an early warning system of invaders.

Skipping forward to the unfortunate adult, his hypersensitivity to LPS puts his immune system on a hair-trigger. The first phase of defense is called the "innate" response. In the brain, this means activating the cells called the microglia. Normally, these guys would simply "hold the fort" until the full immune system was on line and then they would quieten down. But the sensitized ones are convinced that there are invaders about and don't shut down. Eventually this damages neurons and leads to motor symptoms. The substantia nigra has the highest density of microglia in the brain.

The normal way our bodies handle inflammation is to engage the endocrine system to pump out native steroids, primarily cortisol. Kind of like grabbing a fire extinguisher in a kitchen fire. But because of the hypersensitivity, the fire flares up again and again. Stress system engages. Fire dies down. Cortisol level drops. Flames start up again. Over and over.

The already "dysregulated" stress system fights a losing battle and has to settle for a chronic elevation of cortisol. The team Ron mentioned was one of the first to notice that PWP not only had higher average levels, but they didn't cycle up and down through the day as they should. It was more like an elevated flat line than the usual ski slope.

Cortisol/stress has an effect of particular note - it plays heck with the endothelial cells. Those make up the BBB and also the counterpart in the digestive system. There is a lot going on in the GI system. Lots of wastes that you want rid of. Complex bacterial systems that you need to live. Others that you were better rid of. And still others that fall between. H. pylori is one of those, seemingly.

Too many HP and you get problems. Increased LPS as they die off. Some really scary toxins while they are alive. They don't like stomach acid so they neutralize it which messes with your nutrient absorption and produces ammonia - deadly to nerve cells if it gets past your liver. And they slow down your stomach action so your meds just sit there at times.

So there is a thumbnail of PD. Immune system attacking SN leads to motor symptoms. Overworked stress system leaves no "bounce" in us and results in non-motor symptoms. Constipation, leaky gut, BBB failure lead to toxins in the brain and microglia go ape. Round and round it goes.