Re: Past history of hard feelings with and SCIA

December 31, 2010

Where do I begin?

Of course, the most important fact is that children with autism need help and

they need it now. That is all I want, because I see children with autism almost

every day and I know they are smart and they can live happy and productive

lives. They just need the right help, right now!

I had picked the name Stop Calling It Autism! even before I met you or your

husband . I was part of the parent group and once WE talked about

stop calling it autism and I said to Dr. Goldberg I was going to create a

website to tell 's story using that it was a good name. He never said no

and anyways we talked about it as a group, not him. He never had a problem

until I came with the idea of the medical disease registry and he said it was a

bad idea. So, I don't get your point of why you think you own the name.

, you and Bill Klimas agreed with me that the registry was a good idea.

We even asked Dr. Goldberg to share his data from his patient charts for us to

start the registry and he never did. We even offered to pay somebody to tally

the data. Once I kept moving forward with the SCIA registry, you know Dr.

Goldberg was not happy with you, Bill Klimas, Kathy on and me. He even

threatened me from dropping my son's care if I didn't stop what I was doing with

SCIA.

While I was a member of the parents group, I really wanted to help families

with children with autism. We used to have conference calls every Thursday

nights, I think they still do. Oh my God, How confusing is to work with Dr.

Goldberg. He used to say, " You have to make a lot of noise so we can be heard " ,

we used to ask him how and he never gave us an answer. He could go around the

same thing for the longest period of time and if you said something that was a

bit different that he thought of he would completely shut you down and make

parents feel that they didn't know what they were talking about. I am a focused

person and I used to take the minutes, come up with action items for ,

assign them to the parents in the parent's group. All the parents in the group

was too busy to help , I used to call Dr. Goldberg to his cell phone when he

was driving home after working at the office and tell him how frustrated I was

that nothing was being done. He even said that I was one of the most motivated

and focused parents that he has ever met. For over 6 months nothing got done!!!

How frustrated I was!

I even revamped the website in just matter of weeks, because I used to say

that the current nids.net website hasn't been updated in 10 years and that

didn't make the organization look good. I put it together and just because Dr.

Goldberg and the rest of the parents couldn't agree on what content. They used

to be so many fights over the phone for the simplest things. Many times I found

myself telling people to chill out. Bill Klimas joined the conference calls

several times and Dr. Goldberg and him were just screaming at each other.

many times was there too and he used to get so upset at Dr. Goldberg

too. I used to think it was funny when Bill joined the conference call, because

I was wondering how long it was going to take before him and Dr. Goldberg

started going at each other and how long it was going to take before Bill would

hang up the phone.

Marcia, you said that you were in that parents group for 9 years I believe and

you told me that those were the most stressful 9 years of your life. And that

you wasted 9 years working with Dr. Goldberg.

I put together the new website in just weeks and I think I have it hosted

somewhere and I will post the link to the website later on so you can look at

it. Even Elyse Goldberg wrote me an email on January 11, 2010 in which she said

the following because I designed the new website in a night. And where is

it now? parents have been waiting for a current website for too long now.

" You must be a computer genius to do that in a night!

Thank you

Elyse Goldberg "

When I noticed that was not going anywhere and then I hear from other

parents that is has been like that for 15 years I decided to do something

different. I even wanted to work with Dr. Goldberg to create the medical

disease registry and he refused. So I decided to continue moving forward with

my medical disease registry idea. I even met with the government's disease

registry divisions and talked about the idea of building an autism medical

disease registry. They told me it was a brilliant idea, that it is what is

needed, I also talked doctors around the country said the same. But then Dr.

Goldberg said it was a bad idea. Go figure.

I decided to ask Marcia, Bill and Kathy on to join MY efforts because I

thought we would make a good team. I picked Marcia, because her son's story is

AMAZING! Bill, because of the help he could provide by being brother's of Dr.

Klimas and Kathy on because she runs a autism clinic. But

remember, this was all my idea, and I was the one who approached them.

Working with them was one of the stressful things I have done in my life. Kathy

on wanted to get in the bandwagon, but when I asked to do things she

always said " I am too busy with my practice, I'll get to it next week " weeks

went by and I kept asking for what she had to get done and she used to get

bothered by me calling and asking. She got to a point that she was just plain

cold and rude to me. One time I called her around 8pm one night and she sounded

bothered by me calling and she said " I have to call you tomorrow, because I am

having supper with my family and then we are going to sleep " I thought " What? "

She is going to sleep at 9pm when I work every night on SCIA until 12 to 1am and

wake up at 5:50am to go to work and I never say I am busy to get the work for

SCIA done. Bill Klimas talks too much about doing things, but doesn't get

anything done. I used to ask him to do things that it would take me 1 hour to

do and weeks passed by and he would not finish them and I used to call him and

he would not answer the phone or get back to us. When we talked in the phone,

he wanted to act with me like he did with Dr. Goldberg. One time he said " If we

don't do it my way, I won't work with you anymore " Other time Marcia called me

and told me " You know what Bill said?, that just because you asked him to do

something that he was not going to do it " I said, " Oh, that's nice "

And you Marcia, I didn't like your ideas of offending people in other lists

like the mb12 valtrex and when I stopped working with you, you still did it. You

went to the mb12 valtrex list and you disrespected Stan Kurtz the same way you

are doing to me now. You don't go to other groups and tell parents that they

are " frying their children's brains " Then come back to the list and like

you and Bill post that " Marcia and Bill are making noise in other lists " At

SCIA WE DON'T ALLOW THOSE BEHAVIORS! THAT IS COMPLETELY UNETHICAL AND FLAT

DISRESPECTFUL!!! Especially, when parents are doing the thing they are doing

because of what has failed to do over the last 15+ years.

And we only were working together for 5 weeks in which absolutely NOTHING got

done.

The only thing that has done over the last 15 year has been isolating

themselves from the rest of the world instead of being the complete opposite.

Once I figured that out, I said, I don't want to do anything with these group of

people. And what a great decision that has been. I have been making so many

allies over the past 6 months. Medical researchers, doctors, organization and

parents all over the world.

We have done more in 6 months than in 15 years. You know why? Because at

SCIA we are focused in one thing and one thing only. Which is respecting

everybody, it doesn't matter what they believe in. Instead of calling them

stupid like Dr. Goldberg does, we just teach them the right science. People

just need to have their eyes opened with the right science, not by telling them

" you are frying your child's brain " without explaining to them why.

How many people in this list understand how medications work, what the side

effects are, why some children improve and others don't. Marcia, you have been

treating for how many years now? 15, 16 and you still have no idea of how

to read or what his lab test results mean. That is the big flaw in , the

failure to educate parents correctly.

If you think that Dr. Goldberg and Kathy on have been spending their

lifetimes working on this. Why don't you tell them to teach other medical

doctors around the world so many children can be helped? Tell them to go to

every single autism conference to talk about without yelling or calling

people that disagree with them stupid.

You even told me that you didn't talk to Dr. Goldberg for years and that you

" hate him " and I quote you. And now you hate me and you love him. That is just

strange.

Hey, you don't need to be a medical doctor to do great work. After I stopped

working with I've been quite busy. I even went ahead and took courses to

become a certified medical researcher. Yes, medical researcher, how cool is

that? If you think I don't know what I am talking about, why don't you get Dr.

Goldberg and Elyse to read the following scientific explanation I put together

about autism and tell you what they think? Doesn't it explain what is happening

to the majority of the children with autism?

Autism According To SCIA

http://www.stopcallingitautism.org/autism.html

In the six months since we stopped working together I have spent thousands of

dollars from my own pocket getting SCIA on its feet. We hired an attorney for

SCIA, we have an accountant, we have graphic designers, business administrators,

medical researchers working with us, we built a website in English and Spanish,

we are building computer systems to manage the medical disease registry and we

are about to receive medical approval for the medical disease registry.

What have you, Bill Klimas, Kathy on or Dr. Goldberg in the last months

to change the world? Not even the simplest things like a website has been

launched. A book was written, but are the proceedings of the sales going to the

nonprofit organization so more children can be helped? I don't think so.

So you can get as many people as you want and caution the world about Stan Kurtz

and , but at the end, the actions speak louder than words. And

the question is " what can you do to help children with autism from all over the

world? " I don't think you or have the answer to that question for the past

15 years

At SCIA we will always fight for all the families that need help and will do

what we think it's best for them. With the right science, teamwork, listening

to people's ideas and lots of hard work. We will not sit down with our arms

crossed for another 15 years and see the autism incidence to increase to 1 in 20

children!

I apologize for the people that don't care about this kind of drama, but some

people in this list are known for loving to cause dramas. I just want to

set things straight, and so people know that SCIA IS NOT ! And that the

medical disease registry IS TOTALLY 100% SCIA's and the people surrounding SCIA.

And that for the most part is the way he is today BECAUSE OF THE SCIENCE

SCIA BELIEVES IN and only in a small part by .

I won't be replying any longer to this nonsense post. I will be continuing to

update parents in this list about the SCIA medical disease registry. Or you can

join the SCIA's or Facebooks groups.

Happy New Year!

Stop Calling It Autism!

http://www.stopcallingitautism.org

>

> Karla,

>

> You are right there are hard feelings with and SCIA. Maybe I can

> explain what happened in the past so you understand the posts people have

> made. , Bill, Kathy and Jen all have some legitimate concerns. Having

> said that, I do disagree with the post that said this is the site and

> it should be for discussing . I think we all should discuss anything

> and everything that could possibly help any child with Autism.

>

> and I were best friends and would talk several times a day in order to

> further the mission of SCIA. As a matter of fact, it was my husband who

> coined the name Stop Calling It Autism (SCIA) for Dr. Goldberg. We used it

> as a title for something I ghost wrote for Dr. Goldberg. liked it and

> took it for the organization, failing to ask permission from Dr. G.

>

> Kathy on, Bill Klimas and I were board members for SCIA. That is how

> much we believed in what was doing. But that all ended after did

> some things that were unethical. Like many before him including some

> doctors we know, his ego got in the way of doing the right thing and hurt

> what he was trying to accomplish. Having said that, I still believe in

> SCIA's mission that Autism needs to be recognized for what it is, a medical

> disease rather than psychiatric problem.

>

> My concerns first started with giving medical advice to parents who

> were on the SCIA list serve (which no longer exists). is very

> intelligent and definitely had the desire to help his son and others.

> However, he does not have the medical background and was just a little too

> sure of himself. told me he thought he knew as much or more medically

> than people who went to medical school and are highly skilled in what they

> do. People like Kathy and Dr G who have spent a lifetime learning the

> science of how to help our kids.

>

> As board members, we warned over and over again to stop giving out

> dosages and other stuff that could put our mission at risk. He toned it

> down some, but continued despite my daily reminders that he shouldn't do

> this. I know he just wanted to help children get better, and had his heart

> in the right place. However, he failed to acknowledge each child is

> different and has different medical issues. As a result what helped

> could hurt another child who is not being followed medically. was

> putting kids at risk. I repeatedly told him it was okay to say what worked

> for , but not give medical advice.

>

> That was only the beginning of my concerns. wanted total control of the

> SCIA organization without any checks and balances. He came up with bylaws

> and asked the board to sign off on them.

> We would not approve bylaws that put one person, , in the position of

> founder/executive director/chairman with veto power over virtually

> everything. I told although I know he would never do anything wrong,

> we needed bylaws that would protect the organization from anyone and

> everyone, even him.

>

> did not like how we wanted the bylaws changed. He did not want anyone

> to question what he thought was right. His solution was to replace the

> entire board of directors without notifying any of us. After months of hard

> work, he fired us. He replaced us with his wife and sister without so much

> as a phone call.

>

> He thought what he needed to accomplish for kids justified any action. What

> failed to understand is that no one individual is more important than

> the mission or the organization. SCIA wasn't his, even though he started it.

> It belonged to the kids we were trying to help. I'm sure his wife and

> sister are great people. However, it is the diversity of ideas and coming to

> consensus that helps an organization accomplish great things. A leader who

> is insecure needs everyone to agree with him does not benefit any group.

>

> I thought and I were friends and was so excited about what we were

> trying to accomplish. To be honest I missed after he canned me from

> the board. I was used to talking to him daily about what we hoped to

> accomplish for all children with autism. I'm sorry things ended this way,

> but I must caution others about working with . Although I don't

> completely understand what he is saying medically about mitochondrial cells,

> I do know Autism is a complex disease and not the same for everyone

> affected. If Autism were that simple, it would have been cured a long time

> ago. Blindness might be an analogy that easily exemplifies what I'm trying

> to say. There are many different causes for being blind, but the end result

> is lack of sight. My kid has and needs antivirals and antifungals to

> function normally, but that may not be the cause or solution for other

> children with Autism.

>

> So there is a reason for the concern surrounding SCIA and the posts. We all

> wanted to succeed and still do, but because of past history have

> questions about SCIA. Hope this helps explain why people posted as they

> did.

>

> Best,

>

> Marcia

>

> </message/45069;_ylc=X3oDMTJxYmpkNGZhBF9TA

> zk3MzU5NzE1BGdycElkAzEyODk0MARncnBzcElkAzE3MDUwNjE2MTYEbXNnSWQDNDUwNjkEc2VjA

> 2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTI5Mzc4MDMxOA--> Re: Autism according Stop

> Calling It Autism! (SCIA)

>

> Posted by: " Karla Fine "

> <mailto:karla_fine@...?Subject=%20Re%3A%20Austim%20according%20Sto

> p%20Calling%20It%20Autism%21%20%28SCIA%29> karla_fine@...

> <karla_fine@...>

> karla_fine@...

>

> Thu Dec 30, 2010 8:00 pm (PST)

>

> Why are you all so hard on and his posts. He is just like any

> other parent telling us what worked for him and his son. He is sharing

> information. He is not forcing us to do what he did. I don't get it. It

> almost sounds like a personal thing toward him, like a dislike. If you

> dislike him, keep it to yourself instead of influencing others. Sorry, I'm

> new and neutral to all of this but it is so obvious that you have something

> against him. I do not get what it is. He is only sharing what worked for him

> just like many other parents have done so in this list and I don't hear you

> attacking those parents.

>

> What is this? If I'm completely off base, help me understand please.

>

> Thanks

>

> Karla

>

December 31, 2010

Dear :

I have been going to Dr.Goldberg for 9 years. He has always spoken highly of

you to me and has often recommended I contact you with my son's story. I admire

your passion to help our children. You have been passionate and very diligent

with your convictions to share healing, hopeful news to desperate parents. Over

the past 9 years I have seen my son go from a child that would not speak to a 14

year old freshman in High School who wants to go the MIT and become a

rollercoaster designer! I believe my son has a full life because of the medical

choice we made with Dr. Goldberg. In addition to my son's success, I have

started to be under Dr. Goldberg's care because I was diagnosis with Lupus 2

years ago. Ever since I have been on the protocol MY ANA and DNA turned

back negative and I have not had one Lupus break out! This has dumfounded the

medical group of doctors I have been seeing for my Lupus! This fight for our

children is real and we should all support each other and not have division. I

pray for your continued success and together hopefully we will all share the

hope we have found!

Take care and have a blessed New Year!

Allgood

Re: Past history of hard feelings with and SCIA

Where do I begin?

Of course, the most important fact is that children with autism need help and

they need it now. That is all I want, because I see children with autism almost

every day and I know they are smart and they can live happy and productive

lives. They just need the right help, right now!

I had picked the name Stop Calling It Autism! even before I met you or your

husband . I was part of the parent group and once WE talked about stop

calling it autism and I said to Dr. Goldberg I was going to create a website to

tell 's story using that it was a good name. He never said no and anyways

we talked about it as a group, not him. He never had a problem until I came with

the idea of the medical disease registry and he said it was a bad idea. So, I

don't get your point of why you think you own the name. , you and

Bill Klimas agreed with me that the registry was a good idea. We even asked Dr.

Goldberg to share his data from his patient charts for us to start the registry

and he never did. We even offered to pay somebody to tally the data. Once I kept

moving forward with the SCIA registry, you know Dr. Goldberg was not happy with

you, Bill Klimas, Kathy on and me. He even threatened me from dropping my

son's care if I didn't stop what I was doing with SCIA.

While I was a member of the parents group, I really wanted to help

families with children with autism. We used to have conference calls every

Thursday nights, I think they still do. Oh my God, How confusing is to work with

Dr. Goldberg. He used to say, " You have to make a lot of noise so we can be

heard " , we used to ask him how and he never gave us an answer. He could go

around the same thing for the longest period of time and if you said something

that was a bit different that he thought of he would completely shut you down

and make parents feel that they didn't know what they were talking about. I am a

focused person and I used to take the minutes, come up with action items for

, assign them to the parents in the parent's group. All the parents in the

group was too busy to help , I used to call Dr. Goldberg to his cell phone

when he was driving home after working at the office and tell him how frustrated

I was that nothing was being done. He even said that I was one of the most

motivated and focused parents that he has ever met. For over 6 months nothing

got done!!! How frustrated I was!

I even revamped the website in just matter of weeks, because I used to

say that the current nids.net website hasn't been updated in 10 years and that