Clinical trials

May 30, 2002

In a message dated 5/28/2002 5:35:13 PM Central Daylight Time,

jeffb@... writes:

> how much money is needed to get clinical trials going? if this money

> is donated what would be the timeframe for geeting new meds in the

> pipeline?

>

I understood Dr. G. to say that he needs investors in the for-profit side of

for the clinical trials. The non-profit side--donations--should be used

for helping needy families get to Dr. G., etc. Has something changed?

May 30, 2002

,

If the nonprofit side does not get launched then Dr. G will be the only

person seeing kids and it won't matter how much money we raise the waiting

list will be impossible. If the nonprofit side doesn't launch soon the trials

will go on but they will be on adults and kids will be years away from the

trials and getting the actual drugs. If the for profit side launches we will

have clinics all over the US. Kathy -NNY

May 30, 2002

In a message dated 5/30/02 9:24:56 AM Pacific Daylight Time,

whcmccain@... writes:

> understood Dr. G. to say that he needs investors in the for-profit side of

> for the clinical trials. The non-profit side--donations--should be

> used

> for helping needy families get to Dr. G., etc. Has something changed?

>

That is the ideal scenario. but if we get non-profit funds to finance the

theraputic trials, then those will be used. The mission is to get the trials

funded yesterday, it can come from either entity.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

May 30, 2002

I have just spent a week in Dr. G's office looking at data and there is no

question in my mind that getting funding for the clinical trials is the most

important thing of all of the things that we have to do in my opinion. The

protocol (which I think is an erroneous term) is the practice of

pediatric medicine. It is tricky and somewhat complicated because the

practitioner always has to respond to what the immune system is doing. In a

way it is like playing tennis with one arm in a sling. You are constantly

responding to what the other player is doing and you are never quite in

control. This seems to be a bigger problem for some children than with

others. While it certainly seems to help all of the children that stick with

it, there is no question in my mind that the higher level of drugs are

needed. If anyone knows anyone who might be a potential investor now is the

time to talk to them and put them in touch with for further

information. Kathy -NNY

May 31, 2002

In a message dated 5/30/2002 12:59:59 PM Central Daylight Time,

JOSKAT95@... writes:

> If the for profit side launches we will

>

I am wondering if there isn't some way to reach prospective investors without

actually knowing them personally. My sister works for a rather large company

and has suggested that if she could get a copy of the business plan, she

might be able to show it around. Do you have any suggestions?

May 31, 2002

<<If the nonprofit side does not get launched then Dr. G will be the only

person seeing kids and it won't matter how much money we raise the waiting

list will be impossible. If the nonprofit side doesn't launch soon the trials

will go on but they will be on adults and kids will be years away from the

trials and getting the actual drugs. If the for profit side launches we will

have clinics all over the US. >>

Again, I am somewhat confused. What will the non-profit side do? Will it

help to pay for trials? And then the for profit side will open clinics? Is

this correct?

Thanks,

May 31, 2002

In a message dated 5/30/2002 1:07:52 PM Central Daylight Time,

Cure2000@... writes:

> That is the ideal scenario. but if we get non-profit funds to finance the

> theraputic trials, then those will be used. The mission is to get the

> trials

> funded yesterday, it can come from either entity.

>

Thanks, Tina. Now I get it! Okay, so let's get started fundraising!

May 31, 2002

If the for profit side launches they will start the trials and set up

clinics. Kathy -NNY

May 31, 2002

Does anyone have Doug Flutie's personal Email

address? And / or phone # ? I think that he can

be persuaded to invest if he knows that he would

benefit financially and personally (his own son)...

I believe a letter with careful editing would do the

trick. Email me ASAP with any way to contact

him.

Thanks,

Michele

May 31, 2002

Excellent idea ! I know of an excellent company

named PrimeAmerica who would be interested in

taking a look at the business plan. There is no

better incentive for businesses to guarantee PROFIT !

Michele

May 31, 2002

I think than anyone who is interested in the For Profit plan should contact

for specifics.

Re: clinical trials

>

> Excellent idea ! I know of an excellent company

> named PrimeAmerica who would be interested in

> taking a look at the business plan. There is no

> better incentive for businesses to guarantee PROFIT !

>

> Michele

>

May 31, 2002

We have a friend that's an analyst for a huge investment bank. Cooincidentally,

they also have an autistic child. They haven't been particularly interested in

when I've discussed it with them. (Although, he has chronic fatigue

syndrome which I thought was particularly interesting). They're kind of waiting

to see our results. (You know, let someone they know be the guinea pig.)

Anyway, maybe we could get him to look at the business plan.

Re: clinical trials

In a message dated 5/30/2002 12:59:59 PM Central Daylight Time,

JOSKAT95@... writes:

> If the for profit side launches we will

>

I am wondering if there isn't some way to reach prospective investors without

actually knowing them personally. My sister works for a rather large company

and has suggested that if she could get a copy of the business plan, she

might be able to show it around. Do you have any suggestions?

May 31, 2002

,

Can you confirm this please? Does the child with autism also have CFS? Were you

refering to his Father?

Does anyone know of a case where autism and CFS are observed in the same person,

and is this common?

Thanks,

Jon.

Re: clinical trials

In a message dated 5/30/2002 12:59:59 PM Central Daylight Time,

JOSKAT95@... writes:

> If the for profit side launches we will

>

I am wondering if there isn't some way to reach prospective investors

without

actually knowing them personally. My sister works for a rather large

company

and has suggested that if she could get a copy of the business plan, she

might be able to show it around. Do you have any suggestions?

May 31, 2002

Jon,

Oops! That was confusing, huh? Anyway, it's the father that has CFS.

Re: clinical trials

In a message dated 5/30/2002 12:59:59 PM Central Daylight Time,

JOSKAT95@... writes:

> If the for profit side launches we will

>

I am wondering if there isn't some way to reach prospective investors

without

actually knowing them personally. My sister works for a rather large

company

and has suggested that if she could get a copy of the business plan, she

might be able to show it around. Do you have any suggestions?

June 4, 2002

For profit plan includes pharmesuetical companies and medical Board

Advisors as well as investors to provide capital for venture profit to

finacnce theraputic trials to investigate immune modulators as a cure for

diseases including but not limited to ASD, ADD, LDE's & CFIDS/FM.

Nn-profit plan provides for soliciatation of tax exempt funds to finance

Coalition in the operation of Public education, PR, Chapter Development,

Moral, emotional and educational support to sufferers and their families

and involved professionals, trainingg implementation to appropriate

pratictioners re: treatment protocol, advocacy, assitance with uncovered

medical costs in relation to treatment, administration and operational

costs, AND funds for the clinical trials in the absence of for profit funding

completion.

I think the list would benefit from having the " game plan " explained

> regarding what is happening with . If I don't know how things are

> working, I am not able to explain it to anyone else, and that means no

> MONEY honey. People who invest, or donate, need to know what they are

> getting.

research Institute is not investigating into the cause or verification

that above diseases are connected and fall into category, nor the

hypothesis that immune modulators are the successful treatment. NRI is using

the multitude of peer reviewd studies collected from the last ten years which

already accomplish this goal. NRI's ONLY misssion is to put into action

clinical trials immediately upon first phase funding completion beginning

with children dx ASD., 2nd phase, adults dx CFIDS.

Which includes immune profiling or typing to determine which subgroups will

benefit from which modulating agents. 2nd phase to determine dosage, method

of induction (sublingual, IV, etc), proficiency of each agent, etc. In other

words, nothing but a cure now.

Coalition will then gear up to seek out and brief qualified

diagnosee's of available treatment and post treatment follow up coordination

of ancillary theraputic services....ie S & L OT, Discreet Trial (Methods of

assisting the healed brain to catch up), Lobbying for Health Ins. Coverage of

new protocol, clinic site selection and set up, practioner training, New Pub

Ed campaign.

>

> Again, I am somewhat confused. What will the non-profit side do? Will it

> help to pay for trials? And then the for profit side will open clinics?

> Is

> this correct?

> Thanks,

>

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

September 30, 2003

Sandy -

Thanks for the info. As it is, I'm a clinical trial coordinator so I'm

familiar with those sites. I've advertised on CenterWatch for a couple of

trials myself. I do diabetes and statin trials at the moment, but I've done

chronic pain studies, Parkinson, nutrition, implanted devices, lots of

interesting stuff.

This looked like a good trial for this list. I called this morning and they

said you have to have P over at least 1% of your body, an area they describe

as the size of the palm of your hand. Since I don't, they wouldn't give me

any other info. That's how it is when companies compete. NIH trials

frequently have websites and lots of available info, but drug companies keep

things pretty quiet, as these folks are.

Anyone who's interested, call 1-877-687-8839 and see if someone in your area

is a participating site. The sponsors are Amgen and Wyeth, both large

pharmaceutical houses. They are looking for people with P and PA.

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January 11, 2005

Date: Sun, 9 Jan 2005 17:34:34 EST

From: marciemjm@...

Subject: Re: Re: Keeping LDN prescribing Dr. Info quiet

Abby,

Marcie,

I'm honestly not certain what my opinion is about this topic. I think that

clinical trials are important, but I also think that I'm glad that they are

going on in other countries. Hopefully when those trials that are taking

place (I think in Germany?) are complete, some doctors here in the US will

be willing to trust them and go ahead and write prescriptions for LDN. If

not, there's always MedsMex or whatever that web site in Mexico was.

Vali

I'm inclined to agree with you, and at the same time I know that a trial with

'scientific proof' (whatever that means) would maybe get doctors to be more

willing to prescribe. I have a prescribing doc, and I can afford it now. I

may not be able to if the FDA ever put their stamp of approval on

it. Catch 22,

I guess!

Marcie

December 23, 2007

Hi Vicki! Geoff here.

If you change your perspective from " the government protects me " to " what makes

the most profit " , your confusion will immediately disappear. >> FOLLOW THE

MONEY <<

The sales pitch from government is " we protect you " . This is no different than

the sales pitch from the guy on the car lot who says, " this car is You! " or the

gal in the dress shop who says, " that dress makes you look sexy " . They are just

carefully measured words offered in hope of eliciting a specific response. In

the case of the car salesman, the response is you buy the car; for the dress

shop lady, you buy the dress; for government, you keep them in power or give

them even more power -- over you.

Once you adjust your mindset, then it's easy to understand why what gets

approved and what does not. There is far, far more money in illness than

wellness. Ill people will spend every penny they can get their hands on --

their own, their comrades' with whom they have mutual aid agreements

(insurance), even their neighbors' to the point of taking it by force (tax

funded social programs) in order to get well. The longer and more desperately

ill they are, the more they will fight to do this -- sending the money into the

hands of the sales person.

So who's selling what's getting approved? Who's selling what you want? Who's

" dissing " protective and healing items with pitches such as " no clinical trials "

and " no published studies " ?

Self-interest is not the bastion of America. It is human nature. I will say

it's been such since the fall. My evolutionist friends will say it's an evolved

social nature. Regardless, it exists, it always has existed and it has never

not existed despite countless and unending attempts to forge a utopian society.

America's greatness came from recognizing this basis of human nature and

harnessing it, rather than trying to deny its existence or change it.

Unfortunately, it seems many simply do not see, and their blindness is rampant

amongst all classes, all beliefs, all ethnicities and all nationalities. Thus

we (the human race) repeat the same failed experiments over and over again

expecting different results.

So that sums it up, to me that is. Just follow the money instead of the sales

pitch.

By the way, while many drugs approved elsewhere are not available here -- the

grass on the other side of the fence is not necessarily greener. Try getting

1,000 mg vitamins in Europe. Here you just go to Costco -- there you go to

jail. Human nature is what it is. Those who recognize it profit from it, those

who don't pay homage, money and power to those who do. Few are the exceptions.

There are only 4 ways I know of to get your hands on the drug you seek: (1) Go

to Japan or a nation where the drug is lawfully available, buy it and use it

there; (2) Go to Japan or a nation where the drug is lawfully available, buy it

and try to bring it back -- risking confiscation and jail; (3) Have a trusted

friend buy it in Japan or a nation where the drug is lawfully available send it

to you by whatever means -- risking confiscation and jail; or (4) Buy it here as

a black-market item -- risking confiscation, jail, the complications of

involving yourself with criminals and unreliable mixtures passed off as the drug

you want. If it were me and I could afford it and was so convinced this was the

only option in life, I'd find a way to do #1. Otherwise, I'd search with the

same vigor for options other than this drug.

Geoff

Re: rheumatic Clinical Trials

Hi Geoff,

I am confused about this....seems like every drug takes so long to get

approved, how do we truly know that some don't? And how does the FDA decide what

to do trials on and what to automatically approve? This confuses me. I know the

FDA has sometimes not approved thigns that were approved in Europe for a long

time...and they had no problems yet the FDA for political reasons decided to

hold off on approving. And other things they approve, people die from. So I dont

much trust the FDA. A drug in Japan helps people with RA as well as my illness

which is hard to find, much more RA drugs. Yet here its not approved for

anything at all let alone my illness. I dont even know how to get my hands on

it.

Geoff <geoff@...> wrote:

" ...the reality is that only 15 percent of all things done in current

medicine have ever been proven by a controlled clinical trial. 15 percent. " --

Dr. Mercola (12-22-07 Hearing Loss)

If you remember this, then the next time someone says you should wait for

clinical trials, you'll have some idea of the true impact of that statement.

December 23, 2007

Hey Geoff!

Thanks so much for your reply. I am kind of at my wits end. The ear doctor

told me that short of stem cells there is nothing that can be done for my inner

ear damage and that I will always be dizzy. I still hold out hope it isnt viral

like he says but a bacteria and that this antibiotic therapy will help and

hopefully not ruin my stomach in the process. The Sjogrens and Peipheral

neuropathy, the rheumatologists and neurologists that deal with both are

clueless. It's been a lot of time, money, travel, and needless energy to get

nowhere. And I am not from a affuent family, I work full time so everything

requires a lot out of me and no connections with anyone useful. So when I

learned of this drug in Japan I was interested but I worry that they wont accept

me as a patient being I am a non-citizen. I ran into that with Rituxin. At least

Rituxin is used here...but not for SS. Yet this Japanese drug is not used in the

US for anything so if Rituxin was impossible then this would

be even more so. I spoke with this doctor in Europe and he said even for the

clinical trial (which is what is being done in Japan) I wouldnt qualify being I

was a non citizen. I have dual citizenship in another European country but that

didn't seem to matter. Too bad I thought I should have stayed where I was born

and have free access to this drug. But since then I began the antibiotic route

but taking multiple antibiotics rather than just doxy or mino.

You sound very well versed in all this. What do you think of that

Truedeau (spelling is off) he is on the infommericals for his alternative ways

to heal, and has gotten in trouble by the FDA for selling his books which they

claim are misleading to the public because he says there is a natural cure for

just about anything. May I ask what you suffer from and what methods you have

taken to imrpove your health? How long have you been taking whatever you take

and how are you doing so far? Thanks for your email, it would be great to hear

from you again. You are very knowledgable. Happy Holidays.

Geoff <geoff@...> wrote:

Hi Vicki! Geoff here.

If you change your perspective from " the government protects me " to " what makes

the most profit " , your confusion will immediately disappear. >> FOLLOW THE MONEY

<<

The sales pitch from government is " we protect you " . This is no different than

the sales pitch from the guy on the car lot who says, " this car is You! " or the

gal in the dress shop who says, " that dress makes you look sexy " . They are just

carefully measured words offered in hope of eliciting a specific response. In

the case of the car salesman, the response is you buy the car; for the dress

shop lady, you buy the dress; for government, you keep them in power or give

them even more power -- over you.

Once you adjust your mindset, then it's easy to understand why what gets

approved and what does not. There is far, far more money in illness than

wellness. Ill people will spend every penny they can get their hands on -- their

own, their comrades' with whom they have mutual aid agreements (insurance), even

their neighbors' to the point of taking it by force (tax funded social programs)

in order to get well. The longer and more desperately ill they are, the more

they will fight to do this -- sending the money into the hands of the sales

person.

So who's selling what's getting approved? Who's selling what you want? Who's

" dissing " protective and healing items with pitches such as " no clinical trials "

and " no published studies " ?

Self-interest is not the bastion of America. It is human nature. I will say it's

been such since the fall. My evolutionist friends will say it's an evolved

social nature. Regardless, it exists, it always has existed and it has never not

existed despite countless and unending attempts to forge a utopian society.

America's greatness came from recognizing this basis of human nature and

harnessing it, rather than trying to deny its existence or change it.

Unfortunately, it seems many simply do not see, and their blindness is rampant

amongst all classes, all beliefs, all ethnicities and all nationalities. Thus we

(the human race) repeat the same failed experiments over and over again

expecting different results.

So that sums it up, to me that is. Just follow the money instead of the sales

pitch.

By the way, while many drugs approved elsewhere are not available here -- the

grass on the other side of the fence is not necessarily greener. Try getting

1,000 mg vitamins in Europe. Here you just go to Costco -- there you go to jail.

Human nature is what it is. Those who recognize it profit from it, those who

don't pay homage, money and power to those who do. Few are the exceptions.