Re: Autism Speaks, Autism Act, Etc./JB/dmps

[Guest guest]

Regarding DMPS....ORAL DMPS has always been legal for use in this country as a compounded medication... FDA approval means the drug companies spent lots of money to get the FDA stamp...The FDA does not actually do any research on drugs...they rely upon information/studies from the drug company (they pay other folks to do this) ....gee how could the Vioxx thing ever happened?

There are lots of chemicals compounded daily none are FDA approved, but that does not mean they are ILLEGAL for use or cannot be prescribed by a doctor for their own patients. I don't think you would ever actually get any of the companies who make DMPS to apply for FDA approval as it cost millions of dollars and they need would want to be able to recoup their $$$.

However, that does not mean it is at ILLEGAL for a doctor to prescribe/compound oral DMPS for their own patients.

Regarding doctors using DMSA for chelation. I was told many years ago by a DAN doc he knew ORAL DMPS was a better chelator than DMSA, but most DAN docs at that time were more familiar/comfortable using a chelating drug already approved for children (lead poisoning)....This was a DAN doc in WA.

Welcome to this crazy world of why the heck nobody will touch the mercury research issue....many of us have seen this go on for several years (my son is 10). Hopefully, the s will do the RIGHT thing...I know they have heard an earful from many parents.

My two cents ( :

www.MomsAgainstMercury.com

-----Original Message-----From: EOHarm [mailto:EOHarm ]On Behalf Of bradfordhandleySent: Wednesday, May 11, 2005 12:50 PMEOHarm Subject: Autism Speaks, Autism Act, Etc.My personal feeling is that one of the most criminal acts in recent times was committed by the IOM when they recommended that no more time be spent on the mercury-autism connection, encouraging that "available funding for autism research be channeled to the most promising areas. [implicit that mercury was not one of them.]"If Autism Speaks wants to be different from CAN, NAAR, and all the other organizations that many of us feel are not representing our children's interests, it is time to acknowledge the giant elephant sitting in the middle of the room, making lots of noise, farting and burping: kids who are detoxifying are getting better.Because of the prominance of Bob and Bernie Marcus, Autism Speaks could be a great agent for change. If they start talking about the "puzzle of autism", the "multifactorial challenge", and searching for the autism gene, I don't think any of our kids are better off.My opinion is that autism speaks should set up a three-pronged approach:1. Go after this elephant in the room right now! Do you really think all the parents and doctors claiming their children are getting better through detoxification are lying? Of course they aren't!! With your money:A. Immediately do a study of 100 children with autism who have never been chelated and test for mercury toxicity. Work with the preeminent metal toxicologists in the country to find the optimal tests to do (not a blood test, for chrissakes!!!) Best plan would be a hair test, standard chelation challenge test, and a blood test to assess "markers of mercury". See what those 100 tests say!!B. Immediately get behind Jim ' study about to begin at ASU which is a double-blind placebo study for 3 months using Oral DMSA on 40 autistic kids. Offer to co-sponsor, extend, or help the funding for getting DMPS FDA-approved so it, too, can be used in a double-blind placebo now.C. Contract with the best toxicologists in the country to devise an optimal agent for chelating children. DMPS was created 60 years ago!!D. Work with DAN! to expand their Doctor network and study what is working in clinical practice to standardize the treatment further.2. Spend the other half of the budget on finding the gene, discovering the autism brain is inflamed, etc. This "pie in the sky" stuff is unlikely to yield actionable results, but knock yourself out, you might find something.3. If #1 starts yileding results, spend your money lobbying to get Thimerosal out of other world countries. It is neither acceptable nor true that thimerosal-free vaccines are too expensive for the third world. That violates every principle my parents and God ever tried to teach me!I just do not understand how organizations like CAN cannot address the very obvious fact that kids are getting better. This is one of the goofiest dynamics in the history of medicine:- Most "diseases" without a known cause receive tons of funding and spend all their time trying to establish cause/cure!!- There are many, many intelligent parents doctors, and scientists who freakin' KNOW the cause of autism. Wake up - it's cure time!!To Mark's point, it's too early to judge Autism Speaks. Having said that, if their website is a reflection of how they feel, they are not earning any respect from me, and they are alienating the community of activists who I believe represent the change for autism. The s are smart people. I'm holding out my hope that Bob has plenty of sack to do the right thing. Just because he has power doesn't mean he lacks courage, as Dan Burton and Dave Weldon (and many others!!) have shown us.My 2 cents,JB

[Guest guest]

I am about 1200 Emails behind but in reference to Bernie Marcus bringing something good to the table. He was the philanthropy behind the famed Marcus Institute in Atlanta.

While the guy is an incredible contributor to the community(aka our new multi-million dollar aquarium) the Marcus Institute does absolutely NOTHING to recover kids.

If you want your child to be a zombie on drugs, sent him to Bernie's wonderful institute.

They don't even back dietary intervention, forget Biomedical topics.

Bernie needs to stick to building products. It wouldn't surprise me at all if he didn't have pharmco chums backing his highly touted, state of the art "institute".

In the mean time, the rest of us have to deal with the parents who have wasted precious recovery time seeing all the eclectic doctors at the "institute" and coming away with nothing but a rating on the CARS scale. Whipdeedo. Yep, he's on the spectrum. Gee thanks Bernie, hey the bill boards with the special needs kids are cute, what do you suppose would happen if you actually helped them.

rescue angel flying in Atlanta

Autism does speak once the Hg comes out.

The Marcus Early Intervention Program serves children ages 2 through 8. These children often have disorders such as autism, mental retardation, feeding or behavior disorders and neurological disorders. The program emphasizes treating problem behaviors before they become complex well- established habits. In early intervention, young children are taught skills that are needed to participate in inclusive school settings. In addition to working with the children, parents and teachers are trained to implement successful intervention methods at home and at school. The cornerstone of the Early Intervention Program is assessment. Comprehensive behavioral and cognitive evaluations are completed in order to determine each childs’ developmental level of behavior, language, acquisition and social skills. Assessments are essential in identifying the areas for intervention so that treatment plans are aimed towards the successful transition from early childhood programs

to more inclusive community programs

Medlin <angelamedlin@...> wrote:

Regarding DMPS....ORAL DMPS has always been legal for use in this country as a compounded medication... FDA approval means the drug companies spent lots of money to get the FDA stamp...The FDA does not actually do any research on drugs...they rely upon information/studies from the drug company (they pay other folks to do this) ....gee how could the Vioxx thing ever happened?

There are lots of chemicals compounded daily none are FDA approved, but that does not mean they are ILLEGAL for use or cannot be prescribed by a doctor for their own patients. I don't think you would ever actually get any of the companies who make DMPS to apply for FDA approval as it cost millions of dollars and they need would want to be able to recoup their $$$.

However, that does not mean it is at ILLEGAL for a doctor to prescribe/compound oral DMPS for their own patients.

Regarding doctors using DMSA for chelation. I was told many years ago by a DAN doc he knew ORAL DMPS was a better chelator than DMSA, but most DAN docs at that time were more familiar/comfortable using a chelating drug already approved for children (lead poisoning)....This was a DAN doc in WA.

Welcome to this crazy world of why the heck nobody will touch the mercury research issue....many of us have seen this go on for several years (my son is 10). Hopefully, the s will do the RIGHT thing...I know they have heard an earful from many parents.

My two cents ( :

www.MomsAgainstMercury.com

-----Original Message-----From: EOHarm [mailto:EOHarm ]On Behalf Of bradfordhandleySent: Wednesday, May 11, 2005 12:50 PMEOHarm Subject: Autism Speaks, Autism Act, Etc.My personal feeling is that one of the most criminal acts in recent times was committed by the IOM when they recommended that no more time be spent on the mercury-autism connection, encouraging that "available funding for autism research be channeled to the most promising areas. [implicit that mercury was not one of them.]"If Autism Speaks wants to be different from CAN, NAAR, and all the other organizations that many of us feel are not representing our children's interests, it is time to acknowledge the giant elephant sitting in the middle of the room, making lots of noise,

farting and burping: kids who are detoxifying are getting better.Because of the prominance of Bob and Bernie Marcus, Autism Speaks could be a great agent for change. If they start talking about the "puzzle of autism", the "multifactorial challenge", and searching for the autism gene, I don't think any of our kids are better off.My opinion is that autism speaks should set up a three-pronged approach:1. Go after this elephant in the room right now! Do you really think all the parents and doctors claiming their children are getting better through detoxification are lying? Of course they aren't!! With your money:A. Immediately do a study of 100 children with autism who have never been chelated and test for mercury toxicity. Work with the preeminent metal toxicologists in the country to find the optimal tests to do (not a blood test, for chrissakes!!!) Best plan would be a hair test, standard chelation

challenge test, and a blood test to assess "markers of mercury". See what those 100 tests say!!B. Immediately get behind Jim ' study about to begin at ASU which is a double-blind placebo study for 3 months using Oral DMSA on 40 autistic kids. Offer to co-sponsor, extend, or help the funding for getting DMPS FDA-approved so it, too, can be used in a double-blind placebo now.C. Contract with the best toxicologists in the country to devise an optimal agent for chelating children. DMPS was created 60 years ago!!D. Work with DAN! to expand their Doctor network and study what is working in clinical practice to standardize the treatment further.2. Spend the other half of the budget on finding the gene, discovering the autism brain is inflamed, etc. This "pie in the sky" stuff is unlikely to yield actionable results, but knock yourself out, you might find something.3. If #1 starts yileding results, spend

your money lobbying to get Thimerosal out of other world countries. It is neither acceptable nor true that thimerosal-free vaccines are too expensive for the third world. That violates every principle my parents and God ever tried to teach me!I just do not understand how organizations like CAN cannot address the very obvious fact that kids are getting better. This is one of the goofiest dynamics in the history of medicine:- Most "diseases" without a known cause receive tons of funding and spend all their time trying to establish cause/cure!!- There are many, many intelligent parents doctors, and scientists who freakin' KNOW the cause of autism. Wake up - it's cure time!!To Mark's point, it's too early to judge Autism Speaks. Having said that, if their website is a reflection of how they feel, they are not earning any respect from me, and they are alienating the community of activists who I believe represent the

change for autism. The s are smart people. I'm holding out my hope that Bob has plenty of sack to do the right thing. Just because he has power doesn't mean he lacks courage, as Dan Burton and Dave Weldon (and many others!!) have shown us.My 2 cents,JB__________________________________________________

[Guest guest]

HI ..Isn't Bernie Marcus one of the founders of Home Depot? Just curious..Tim Z

RE: Autism Speaks, Autism Act, Etc./JB/dmps

I am about 1200 Emails behind but in reference to Bernie Marcus bringing something good to the table. He was the philanthropy behind the famed Marcus Institute in Atlanta.

While the guy is an incredible contributor to the community(aka our new multi-million dollar aquarium) the Marcus Institute does absolutely NOTHING to recover kids.

If you want your child to be a zombie on drugs, sent him to Bernie's wonderful institute.

They don't even back dietary intervention, forget Biomedical topics.

Bernie needs to stick to building products. It wouldn't surprise me at all if he didn't have pharmco chums backing his highly touted, state of the art "institute".

In the mean time, the rest of us have to deal with the parents who have wasted precious recovery time seeing all the eclectic doctors at the "institute" and coming away with nothing but a rating on the CARS scale. Whipdeedo. Yep, he's on the spectrum. Gee thanks Bernie, hey the bill boards with the special needs kids are cute, what do you suppose would happen if you actually helped them.

rescue angel flying in Atlanta

Autism does speak once the Hg comes out.

The Marcus Early Intervention Program serves children ages 2 through 8. These children often have disorders such as autism, mental retardation, feeding or behavior disorders and neurological disorders. The program emphasizes treating problem behaviors before they become complex well- established habits. In early intervention, young children are taught skills that are needed to participate in inclusive school settings. In addition to working with the children, parents and teachers are trained to implement successful intervention methods at home and at school. The cornerstone of the Early Intervention Program is assessment. Comprehensive behavioral and cognitive evaluations are completed in order to determine each childs’ developmental level of behavior, language, acquisition and social skills. Assessments are essential in identifying the areas for intervention so that treatment plans are aimed towards the successful transition from early childhood programs to more inclusive community programs

Medlin <angelamedlin@...> wrote:

Regarding DMPS....ORAL DMPS has always been legal for use in this country as a compounded medication... FDA approval means the drug companies spent lots of money to get the FDA stamp...The FDA does not actually do any research on drugs...they rely upon information/studies from the drug company (they pay other folks to do this) ....gee how could the Vioxx thing ever happened?

There are lots of chemicals compounded daily none are FDA approved, but that does not mean they are ILLEGAL for use or cannot be prescribed by a doctor for their own patients. I don't think you would ever actually get any of the companies who make DMPS to apply for FDA approval as it cost millions of dollars and they need would want to be able to recoup their $$$.

However, that does not mean it is at ILLEGAL for a doctor to prescribe/compound oral DMPS for their own patients.

Regarding doctors using DMSA for chelation. I was told many years ago by a DAN doc he knew ORAL DMPS was a better chelator than DMSA, but most DAN docs at that time were more familiar/comfortable using a chelating drug already approved for children (lead poisoning)....This was a DAN doc in WA.

Welcome to this crazy world of why the heck nobody will touch the mercury research issue....many of us have seen this go on for several years (my son is 10). Hopefully, the s will do the RIGHT thing...I know they have heard an earful from many parents.

My two cents ( :

www.MomsAgainstMercury.com

-----Original Message-----From: EOHarm [mailto:EOHarm ]On Behalf Of bradfordhandleySent: Wednesday, May 11, 2005 12:50 PMEOHarm Subject: Autism Speaks, Autism Act, Etc.My personal feeling is that one of the most criminal acts in recent times was committed by the IOM when they recommended that no more time be spent on the mercury-autism connection, encouraging that "available funding for autism research be channeled to the most promising areas. [implicit that mercury was not one of them.]"If Autism Speaks wants to be different from CAN, NAAR, and all the other organizations that many of us feel are not representing our children's interests, it is time to acknowledge the giant elephant sitting in the middle of the room, making lots of noise, farting and burping: kids who are detoxifying are getting better.Because of the prominance of Bob and Bernie Marcus, Autism Speaks could be a great agent for change. If they start talking about the "puzzle of autism", the "multifactorial challenge", and searching for the autism gene, I don't think any of our kids are better off.My opinion is that autism speaks should set up a three-pronged approach:1. Go after this elephant in the room right now! Do you really think all the parents and doctors claiming their children are getting better through detoxification are lying? Of course they aren't!! With your money:A. Immediately do a study of 100 children with autism who have never been chelated and test for mercury toxicity. Work with the preeminent metal toxicologists in the country to find the optimal tests to do (not a blood test, for chrissakes!!!) Best plan would be a hair test, standard chelation challenge test, and a blood test to assess "markers of mercury". See what those 100 tests say!!B. Immediately get behind Jim ' study about to begin at ASU which is a double-blind placebo study for 3 months using Oral DMSA on 40 autistic kids. Offer to co-sponsor, extend, or help the funding for getting DMPS FDA-approved so it, too, can be used in a double-blind placebo now.C. Contract with the best toxicologists in the country to devise an optimal agent for chelating children. DMPS was created 60 years ago!!D. Work with DAN! to expand their Doctor network and study what is working in clinical practice to standardize the treatment further.2. Spend the other half of the budget on finding the gene, discovering the autism brain is inflamed, etc. This "pie in the sky" stuff is unlikely to yield actionable results, but knock yourself out, you might find something.3. If #1 starts yileding results, spend your money lobbying to get Thimerosal out of other world countries. It is neither acceptable nor true that thimerosal-free vaccines are too expensive for the third world. That violates every principle my parents and God ever tried to teach me!I just do not understand how organizations like CAN cannot address the very obvious fact that kids are getting better. This is one of the goofiest dynamics in the history of medicine:- Most "diseases" without a known cause receive tons of funding and spend all their time trying to establish cause/cure!!- There are many, many intelligent parents doctors, and scientists who freakin' KNOW the cause of autism. Wake up - it's cure time!!To Mark's point, it's too early to judge Autism Speaks. Having said that, if their website is a reflection of how they feel, they are not earning any respect from me, and they are alienating the community of activists who I believe represent the change for autism. The s are smart people. I'm holding out my hope that Bob has plenty of sack to do the right thing. Just because he has power doesn't mean he lacks courage, as Dan Burton and Dave Weldon (and many others!!) have shown us.My 2 cents,JB

__________________________________________________

[Guest guest]

Yessireedy!rdurano@... wrote:

HI ..Isn't Bernie Marcus one of the founders of Home Depot? Just curious..Tim Z

RE: Autism Speaks, Autism Act, Etc./JB/dmps

I am about 1200 Emails behind but in reference to Bernie Marcus bringing something good to the table. He was the philanthropy behind the famed Marcus Institute in Atlanta.

While the guy is an incredible contributor to the community(aka our new multi-million dollar aquarium) the Marcus Institute does absolutely NOTHING to recover kids.

If you want your child to be a zombie on drugs, sent him to Bernie's wonderful institute.

They don't even back dietary intervention, forget Biomedical topics.

Bernie needs to stick to building products. It wouldn't surprise me at all if he didn't have pharmco chums backing his highly touted, state of the art "institute".

In the mean time, the rest of us have to deal with the parents who have wasted precious recovery time seeing all the eclectic doctors at the "institute" and coming away with nothing but a rating on the CARS scale. Whipdeedo. Yep, he's on the spectrum. Gee thanks Bernie, hey the bill boards with the special needs kids are cute, what do you suppose would happen if you actually helped them.

rescue angel flying in Atlanta

Autism does speak once the Hg comes out.

The Marcus Early Intervention Program serves children ages 2 through 8. These children often have disorders such as autism, mental retardation, feeding or behavior disorders and neurological disorders. The program emphasizes treating problem behaviors before they become complex well- established habits. In early intervention, young children are taught skills that are needed to participate in inclusive school settings. In addition to working with the children, parents and teachers are trained to implement successful intervention methods at home and at school. The cornerstone of the Early Intervention Program is assessment. Comprehensive behavioral and cognitive evaluations are completed in order to determine each childs’ developmental level of behavior, language, acquisition and social skills. Assessments are essential in identifying the areas for intervention so that treatment plans are aimed towards the successful transition from early childhood programs

to more inclusive community programs

Medlin <angelamedlin@...> wrote:

Regarding DMPS....ORAL DMPS has always been legal for use in this country as a compounded medication... FDA approval means the drug companies spent lots of money to get the FDA stamp...The FDA does not actually do any research on drugs...they rely upon information/studies from the drug company (they pay other folks to do this) ....gee how could the Vioxx thing ever happened?

There are lots of chemicals compounded daily none are FDA approved, but that does not mean they are ILLEGAL for use or cannot be prescribed by a doctor for their own patients. I don't think you would ever actually get any of the companies who make DMPS to apply for FDA approval as it cost millions of dollars and they need would want to be able to recoup their $$$.

However, that does not mean it is at ILLEGAL for a doctor to prescribe/compound oral DMPS for their own patients.

Regarding doctors using DMSA for chelation. I was told many years ago by a DAN doc he knew ORAL DMPS was a better chelator than DMSA, but most DAN docs at that time were more familiar/comfortable using a chelating drug already approved for children (lead poisoning)....This was a DAN doc in WA.

Welcome to this crazy world of why the heck nobody will touch the mercury research issue....many of us have seen this go on for several years (my son is 10). Hopefully, the s will do the RIGHT thing...I know they have heard an earful from many parents.

My two cents ( :

www.MomsAgainstMercury.com

-----Original Message-----From: EOHarm [mailto:EOHarm ]On Behalf Of bradfordhandleySent: Wednesday, May 11, 2005 12:50 PMEOHarm Subject: Autism Speaks, Autism Act, Etc.My personal feeling is that one of the most criminal acts in recent times was committed by the IOM when they recommended that no more time be spent on the mercury-autism connection, encouraging that "available funding for autism research be channeled to the most promising areas. [implicit that mercury was not one of them.]"If Autism Speaks wants to be different from CAN, NAAR, and all the other organizations that many of us feel are not representing our children's interests, it is time to acknowledge the giant elephant sitting in the middle of the room, making lots of noise,

farting and burping: kids who are detoxifying are getting better.Because of the prominance of Bob and Bernie Marcus, Autism Speaks could be a great agent for change. If they start talking about the "puzzle of autism", the "multifactorial challenge", and searching for the autism gene, I don't think any of our kids are better off.My opinion is that autism speaks should set up a three-pronged approach:1. Go after this elephant in the room right now! Do you really think all the parents and doctors claiming their children are getting better through detoxification are lying? Of course they aren't!! With your money:A. Immediately do a study of 100 children with autism who have never been chelated and test for mercury toxicity. Work with the preeminent metal toxicologists in the country to find the optimal tests to do (not a blood test, for chrissakes!!!) Best plan would be a hair test, standard chelation

challenge test, and a blood test to assess "markers of mercury". See what those 100 tests say!!B. Immediately get behind Jim ' study about to begin at ASU which is a double-blind placebo study for 3 months using Oral DMSA on 40 autistic kids. Offer to co-sponsor, extend, or help the funding for getting DMPS FDA-approved so it, too, can be used in a double-blind placebo now.C. Contract with the best toxicologists in the country to devise an optimal agent for chelating children. DMPS was created 60 years ago!!D. Work with DAN! to expand their Doctor network and study what is working in clinical practice to standardize the treatment further.2. Spend the other half of the budget on finding the gene, discovering the autism brain is inflamed, etc. This "pie in the sky" stuff is unlikely to yield actionable results, but knock yourself out, you might find something.3. If #1 starts yileding results, spend

your money lobbying to get Thimerosal out of other world countries. It is neither acceptable nor true that thimerosal-free vaccines are too expensive for the third world. That violates every principle my parents and God ever tried to teach me!I just do not understand how organizations like CAN cannot address the very obvious fact that kids are getting better. This is one of the goofiest dynamics in the history of medicine:- Most "diseases" without a known cause receive tons of funding and spend all their time trying to establish cause/cure!!- There are many, many intelligent parents doctors, and scientists who freakin' KNOW the cause of autism. Wake up - it's cure time!!To Mark's point, it's too early to judge Autism Speaks. Having said that, if their website is a reflection of how they feel, they are not earning any respect from me, and they are alienating the community of activists who I believe represent the

change for autism. The s are smart people. I'm holding out my hope that Bob has plenty of sack to do the right thing. Just because he has power doesn't mean he lacks courage, as Dan Burton and Dave Weldon (and many others!!) have shown us.My 2 cents,JB

__________________________________________________

[Guest guest]

Draw your own conclusions (and I don't know if this was pointed out in earlier

posts):

Bernard Marcus is the former Chair and current member of the Board of the CDC

Foundation, a private foundation the purpose of which is to generate private

funding for

CDC projects and in furtherance of CDC objectives. The Board consists of

industry

executives. Mr. Marcus also funded a CDC bioterror alert system in or about

2002.

> Regarding DMPS....ORAL DMPS has always been legal for use in this country

as a

compounded medication... FDA approval means the drug companies spent lots of

money

to get the FDA stamp...The FDA does not actually do any research on drugs...they

rely

upon information/studies from the drug company (they pay other folks to do this)

.....gee

how could the Vioxx thing ever happened?

>

> There are lots of chemicals compounded daily none are FDA approved, but

that does

not mean they are ILLEGAL for use or cannot be prescribed by a doctor for their

own

patients. I don't think you would ever actually get any of the companies who

make DMPS

to apply for FDA approval as it cost millions of dollars and they need would

want to be

able to recoup their $$$.

>

> However, that does not mean it is at ILLEGAL for a doctor to

prescribe/compound oral

DMPS for their own patients.

>

> Regarding doctors using DMSA for chelation. I was told many years ago by

a DAN

doc he knew ORAL DMPS was a better chelator than DMSA, but most DAN docs at that

time

were more familiar/comfortable using a chelating drug already approved for

children (lead

poisoning)....This was a DAN doc in WA.

>

> Welcome to this crazy world of why the heck nobody will touch the mercury

research

issue....many of us have seen this go on for several years (my son is 10).

Hopefully, the

s will do the RIGHT thing...I know they have heard an earful from many

parents.

>

>

> My two cents ( :

>

> www.MomsAgainstMercury.com

> Autism Speaks, Autism Act, Etc.

>

>

> My personal feeling is that one of the most criminal acts in recent

> times was committed by the IOM when they recommended that no more

> time be spent on the mercury-autism connection, encouraging

> that " available funding for autism research be channeled to the most

> promising areas. [implicit that mercury was not one of them.] "

>

> If Autism Speaks wants to be different from CAN, NAAR, and all the

> other organizations that many of us feel are not representing our

> children's interests, it is time to acknowledge the giant elephant

> sitting in the middle of the room, making lots of noise, farting and

> burping: kids who are detoxifying are getting better.

>

> Because of the prominance of Bob and Bernie Marcus, Autism

> Speaks could be a great agent for change. If they start talking about

> the " puzzle of autism " , the " multifactorial challenge " , and searching

> for the autism gene, I don't think any of our kids are better off.

>

> My opinion is that autism speaks should set up a three-pronged

> approach:

>

> 1. Go after this elephant in the room right now! Do you really think

> all the parents and doctors claiming their children are getting

> better through detoxification are lying? Of course they aren't!! With

> your money:

>

> A. Immediately do a study of 100 children with autism who have never

> been chelated and test for mercury toxicity. Work with the preeminent

> metal toxicologists in the country to find the optimal tests to do

> (not a blood test, for chrissakes!!!) Best plan would be a hair test,

> standard chelation challenge test, and a blood test to

> assess " markers of mercury " . See what those 100 tests say!!

>

> B. Immediately get behind Jim ' study about to begin at ASU

> which is a double-blind placebo study for 3 months using Oral DMSA on

> 40 autistic kids. Offer to co-sponsor, extend, or help the funding

> for getting DMPS FDA-approved so it, too, can be used in a double-

> blind placebo now.

>

> C. Contract with the best toxicologists in the country to devise an

> optimal agent for chelating children. DMPS was created 60 years ago!!

>

> D. Work with DAN! to expand their Doctor network and study what is

> working in clinical practice to standardize the treatment further.

>

> 2. Spend the other half of the budget on finding the gene,

> discovering the autism brain is inflamed, etc. This " pie in the sky "

> stuff is unlikely to yield actionable results, but knock yourself

> out, you might find something.

>

> 3. If #1 starts yileding results, spend your money lobbying to get

> Thimerosal out of other world countries. It is neither acceptable nor

> true that thimerosal-free vaccines are too expensive for the third

> world. That violates every principle my parents and God ever tried to

> teach me!

>

> I just do not understand how organizations like CAN cannot address

> the very obvious fact that kids are getting better. This is one of

> the goofiest dynamics in the history of medicine:

>

> - Most " diseases " without a known cause receive tons of funding and

> spend all their time trying to establish cause/cure!!

> - There are many, many intelligent parents doctors, and scientists

> who freakin' KNOW the cause of autism. Wake up - it's cure time!!

>

> To Mark's point, it's too early to judge Autism Speaks. Having said

> that, if their website is a reflection of how they feel, they are not

> earning any respect from me, and they are alienating the community of

> activists who I believe represent the change for autism. The s

> are smart people. I'm holding out my hope that Bob has plenty

> of sack to do the right thing. Just because he has power doesn't mean

> he lacks courage, as Dan Burton and Dave Weldon (and many others!!)

> have shown us.

>

> My 2 cents,

>

> JB

>

>

>

> __________________________________________________

>

[Guest guest]

Nope. This does not surprise me in the least. Other than ABA the Marcus Institute is void of any BioMedical treatment for Autism related disorders.

As far as I am concerned the CDC is guilty of withholding information. If it made public how dangerous Thimerosal was it could have protected our children from a dangerous toxin. They have a long history pertaining to conflict of interest with the pharmcos. Bernie is guilty of aiding and abetting by aligning with them and I would lay money his connection to the pharmcos too. He is NOT our friend. I'll go out on a limb here and say he is a "snake in the grass".

I worry when I see big money and no results. Right up there with multimillion dollar Hopkins studies that conclude "more research is needed". How is it a bunch of stubborn parents raiding our retirement accounts can get better results? Thanks for confirming my hunch.

In the belly of the beast

Atlantarjkrakow <rkrakow@...> wrote:

Draw your own conclusions (and I don't know if this was pointed out in earlier posts): Bernard Marcus is the former Chair and current member of the Board of the CDC Foundation, a private foundation the purpose of which is to generate private funding for CDC projects and in furtherance of CDC objectives. The Board consists of industry executives. Mr. Marcus also funded a CDC bioterror alert system in or about 2002.> Regarding DMPS....ORAL DMPS has always been legal for use in this country as a compounded medication... FDA approval means the drug companies spent lots of money to get the FDA stamp...The FDA does not actually do any research on drugs...they rely upon information/studies from the drug company (they pay

other folks to do this) ....gee how could the Vioxx thing ever happened?> > There are lots of chemicals compounded daily none are FDA approved, but that does not mean they are ILLEGAL for use or cannot be prescribed by a doctor for their own patients. I don't think you would ever actually get any of the companies who make DMPS to apply for FDA approval as it cost millions of dollars and they need would want to be able to recoup their $$$.> > However, that does not mean it is at ILLEGAL for a doctor to prescribe/compound oral DMPS for their own patients.> > Regarding doctors using DMSA for chelation. I was told many years ago by a DAN doc he knew ORAL DMPS was a better chelator than DMSA, but most DAN docs at that time were more familiar/comfortable using a chelating drug already approved for children (lead

poisoning)....This was a DAN doc in WA.> > Welcome to this crazy world of why the heck nobody will touch the mercury research issue....many of us have seen this go on for several years (my son is 10). Hopefully, the s will do the RIGHT thing...I know they have heard an earful from many parents. > > > My two cents ( :> > www.MomsAgainstMercury.com > Autism Speaks,

Autism Act, Etc.> > > My personal feeling is that one of the most criminal acts in recent > times was committed by the IOM when they recommended that no more > time be spent on the mercury-autism connection, encouraging > that "available funding for autism research be channeled to the most > promising areas. [implicit that mercury was not one of them.]"> > If Autism Speaks wants to be different from CAN, NAAR, and all the > other organizations that many of us feel are not representing our > children's interests, it is time to acknowledge the giant elephant > sitting in the middle of

the room, making lots of noise, farting and > burping: kids who are detoxifying are getting better.> > Because of the prominance of Bob and Bernie Marcus, Autism > Speaks could be a great agent for change. If they start talking about > the "puzzle of autism", the "multifactorial challenge", and searching > for the autism gene, I don't think any of our kids are better off.> > My opinion is that autism speaks should set up a three-pronged > approach:> > 1. Go after this elephant in the room right now! Do you really think > all the parents and doctors claiming their children are

getting > better through detoxification are lying? Of course they aren't!! With > your money:> > A. Immediately do a study of 100 children with autism who have never > been chelated and test for mercury toxicity. Work with the preeminent > metal toxicologists in the country to find the optimal tests to do > (not a blood test, for chrissakes!!!) Best plan would be a hair test, > standard chelation challenge test, and a blood test to > assess "markers of mercury". See what those 100 tests say!!> > B. Immediately get behind Jim ' study about to begin at ASU

> which is a double-blind placebo study for 3 months using Oral DMSA on > 40 autistic kids. Offer to co-sponsor, extend, or help the funding > for getting DMPS FDA-approved so it, too, can be used in a double-> blind placebo now.> > C. Contract with the best toxicologists in the country to devise an > optimal agent for chelating children. DMPS was created 60 years ago!!> > D. Work with DAN! to expand their Doctor network and study what is > working in clinical practice to standardize the treatment further.> > 2. Spend the other half of the budget on finding the gene,

> discovering the autism brain is inflamed, etc. This "pie in the sky" > stuff is unlikely to yield actionable results, but knock yourself > out, you might find something.> > 3. If #1 starts yileding results, spend your money lobbying to get > Thimerosal out of other world countries. It is neither acceptable nor > true that thimerosal-free vaccines are too expensive for the third > world. That violates every principle my parents and God ever tried to > teach me!> > I just do not understand how organizations like CAN cannot address > the very

obvious fact that kids are getting better. This is one of > the goofiest dynamics in the history of medicine:> > - Most "diseases" without a known cause receive tons of funding and > spend all their time trying to establish cause/cure!!> - There are many, many intelligent parents doctors, and scientists > who freakin' KNOW the cause of autism. Wake up - it's cure time!!> > To Mark's point, it's too early to judge Autism Speaks. Having said > that, if their website is a reflection of how they feel, they are not > earning any respect from me, and they are alienating the community of >

activists who I believe represent the change for autism. The s > are smart people. I'm holding out my hope that Bob has plenty > of sack to do the right thing. Just because he has power doesn't mean > he lacks courage, as Dan Burton and Dave Weldon (and many others!!) > have shown us.> > My 2 cents,> > JB> > > > __________________________________________________>

[Guest guest]

Well, isn't that special?

Re: Autism Speaks, Autism Act, Etc./JB/dmps

Draw your own conclusions (and I don't know if this was pointed out in earlier posts): Bernard Marcus is the former Chair and current member of the Board of the CDC Foundation, a private foundation the purpose of which is to generate private funding for CDC projects and in furtherance of CDC objectives. The Board consists of industry executives. Mr. Marcus also funded a CDC bioterror alert system in or about 2002.

[Guest guest]

Didn't the Church lady used to say that? Didn't (s)he also say " Could

it be... Satan? "

~Becky

> Well, isn't that special?

>

[Guest guest]

Didn't the Church lady used to say that? Didn't (s)he also say " Could

it be... Satan? "

~Becky

> Well, isn't that special?

>