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