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Re: RE: Stop Calling It Autism! in Facebook

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Just a thought - perhaps the word AUTISM could one day take on a new meaning,

such an abbreviation for AUToimmune and Immune System Malfunction?

From: Kristy Nardini <knardini@...>

Subject: RE: Stop Calling It Autism! in Facebook

" ' ' " <jrodrig6605@...>

Cc: , " Goldberg, MD " <office@...>

Date: Monday, March 29, 2010, 12:57 PM

 

Hi ,

I guess I need to better understand what, exactly, the " marketing message "

is. Are we going to shout from the rooftops that our children are sick with

some big, bad, ugly virus(es), but we don't have definitive proof and we

don't have a definitive cure? Because I'm not ready to do that with my son

and our family. I want to get the word out that our children do not have the

A-word, but we have to really think this through and make sure they won't be

stigmatized and ostracized because the medical terminology and treatment are

not 100% defined. I, for one, do not want to - cannot - risk that my son

will lose the a-word diagnosis just yet from the standpoint of the school

district and our regional center. I also do not want to run the risk that

what he has is likened to HIV/AIDS, and scare potential playmates and

prevent him from possibly being able to play team sports.

So, I hope you can help me to understand a marketing message that will work

for the mainstream, those who really don't care outside of their immediate

circles of concern (i.e. people like my own stubborn brother and sister),

those who can't and won't take the time to really understand the science

behind the explanation. In other words, the message really needs to be

softened, even " dummied-down " , for lack of a better term. Otherwise, I'm

really and truly sorry, but I cannot be a part of this - yet.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini. com

kristytazzini (DOT) com

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto:jrodrig6605@ hotmail.com]

Sent: Monday, March 29, 2010 8:24 AM

knardini@roadrunner .com

Subject: Stop Calling It Autism! in Facebook

Hi Kristy,

As part of creating the Stop Calling It Autism! nonprofit organization we

already had in our plans many different marketing strategies to get people

to know about this organization.

Facebook, Twitter, groups are just a few ways that we can get

thousands of people to know about our great initiatives.

That's how we can make the noise and eventually a difference.

Take care,

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Very good!  I can see it!

________________________________

From: Briffa SeventySeven <briffa77@...>

<jrodrig6605@...>;

Cc: ; MD Goldberg <office@...>

Sent: Mon, March 29, 2010 9:44:01 PM

Subject: Re: RE: Stop Calling It Autism! in Facebook

 

Just a thought - perhaps the word AUTISM could one day take on a new meaning,

such an abbreviation for AUToimmune and Immune System Malfunction?

From: Kristy Nardini <knardini@roadrunner .com>

Subject: RE: Stop Calling It Autism! in Facebook

" ' ' " <jrodrig6605@ hotmail.com>

Cc: groups (DOT) com, " Goldberg, MD " <office@neuroimmuned r.com>

Date: Monday, March 29, 2010, 12:57 PM

 

Hi ,

I guess I need to better understand what, exactly, the " marketing message "

is. Are we going to shout from the rooftops that our children are sick with

some big, bad, ugly virus(es), but we don't have definitive proof and we

don't have a definitive cure? Because I'm not ready to do that with my son

and our family. I want to get the word out that our children do not have the

A-word, but we have to really think this through and make sure they won't be

stigmatized and ostracized because the medical terminology and treatment are

not 100% defined. I, for one, do not want to - cannot - risk that my son

will lose the a-word diagnosis just yet from the standpoint of the school

district and our regional center. I also do not want to run the risk that

what he has is likened to HIV/AIDS, and scare potential playmates and

prevent him from possibly being able to play team sports.

So, I hope you can help me to understand a marketing message that will work

for the mainstream, those who really don't care outside of their immediate

circles of concern (i.e. people like my own stubborn brother and sister),

those who can't and won't take the time to really understand the science

behind the explanation. In other words, the message really needs to be

softened, even " dummied-down " , for lack of a better term. Otherwise, I'm

really and truly sorry, but I cannot be a part of this - yet.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini. com

kristytazzini (DOT) com

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto:jrodrig6605 @ hotmail.com]

Sent: Monday, March 29, 2010 8:24 AM

knardini@roadrunner .com

Subject: Stop Calling It Autism! in Facebook

Hi Kristy,

As part of creating the Stop Calling It Autism! nonprofit organization we

already had in our plans many different marketing strategies to get people

to know about this organization.

Facebook, Twitter, groups are just a few ways that we can get

thousands of people to know about our great initiatives.

That's how we can make the noise and eventually a difference.

Take care,

Link to comment
Share on other sites

Guest guest

I agree, the term needs to be dummied down and also as Dr. Goldberg explains,

this is a

epidemic that is going to get worse.  Right now, this is not on the average

person's radar screen

because they do not think it will affect them.  If they knew it could be worse

and perhaps their

kids would be having kids with autoimmune disease and worse, maybe people would

pay attention.

 

Lynn

From: Kristy Nardini <knardini@roadrunne r .com>

Subject: RE: Stop Calling It Autism! in Facebook

" ' ' " <jrodrig6605@ hotmail.com>

Cc: groups (DOT) com, " Goldberg, MD " <office@neuroimmune d r.com>

Date: Monday, March 29, 2010, 12:57 PM

 

Hi ,

I guess I need to better understand what, exactly, the " marketing message "

is. Are we going to shout from the rooftops that our children are sick with

some big, bad, ugly virus(es), but we don't have definitive proof and we

don't have a definitive cure? Because I'm not ready to do that with my son

and our family. I want to get the word out that our children do not have the

A-word, but we have to really think this through and make sure they won't be

stigmatized and ostracized because the medical terminology and treatment are

not 100% defined. I, for one, do not want to - cannot - risk that my son

will lose the a-word diagnosis just yet from the standpoint of the school

district and our regional center. I also do not want to run the risk that

what he has is likened to HIV/AIDS, and scare potential playmates and

prevent him from possibly being able to play team sports.

So, I hope you can help me to understand a marketing message that will work

for the mainstream, those who really don't care outside of their immediate

circles of concern (i.e. people like my own stubborn brother and sister),

those who can't and won't take the time to really understand the science

behind the explanation. In other words, the message really needs to be

softened, even " dummied-down " , for lack of a better term. Otherwise, I'm

really and truly sorry, but I cannot be a part of this - yet.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini. com

kristytazzini (DOT) com

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto:jrodrig6605 @ hotmail.com]

Sent: Monday, March 29, 2010 8:24 AM

knardini@roadrunner .com

Subject: Stop Calling It Autism! in Facebook

Hi Kristy,

As part of creating the Stop Calling It Autism! nonprofit organization we

already had in our plans many different marketing strategies to get people

to know about this organization.

Facebook, Twitter, groups are just a few ways that we can get

thousands of people to know about our great initiatives.

That's how we can make the noise and eventually a difference.

Take care,

Link to comment
Share on other sites

Guest guest

Hello all,

I can identify with Lynn's words: " average person's radar screen. " The world is

still very uneducated (I know it's not any one person's fault but it doesn't

hurt any less.) 

 

My son's diagnosed with  " high functioning " autism because he is verbal.

 

The other day I had a thought. People with Down's Syndrome have all different

functioning levels. Some are very high functioning, some are nonverbal. However,

to this day I do not know of any people with Down's Syndrome being self

sufficient and truly independent (if anybody does please tell me - I'd love to

hear good news about people with developmental disablilities attaining

self-sufficiency.) Our hearts always go out to a parent of a child with Down's

Syndrome, regardless of their functional level, because Down Syndrome is

obvious.

 

When it come's to my son I not only have to grieve, pick my self up again, and

continue the fight to help him - I have to do it alone. The average person,

which includes friends and family members, simply don't see his disability as

the major issue it is.

 

I am not saying that I am in the same boat as parents of children with severe

autism.  I would never pretend or try to say that it's the same thing. I am

very fortunate that my child is verbal. He's also been making progress, with the

RDI program, that one doctor told me is rarely ever seen in autistic people of

any functional level, even Asperger's. (He's made progress in the domains of

dynamic intelligence and emotional intelligence.)

 

But the fact that he is autistic still hurts - bad.

 

Okay, from now on all my comments will be about :

Parents - What worked to help your child's eczema? Did your child's eczema ever

turn into a fungal issue (that had to treated with topical functionals, or even

systemic antifungals?) Did any of your kids ever have ringworm? My daughter got

a spot of ringworm on her head, and I felt like the worst mother ever thinking

what did I do wrong? Now I believe it's because I'm colonized and probably my

son is too. (And I guess now her.)

 

Did anybody's child get frequent diaper rashes that had to be treated with

antifungals? Both my children did - and I swear I changed them all the time. I

even bought the top of the line diapers. When my son was a baby I would change

him in the middle of the night to prevent it (He was a good sleeper so if I

didn't change him he'd be in the same diaper

 

I commend everybody, parents and professionals, who have been a part of and

is bringing it to light. When I saw the diagram on the Stop Calling it Autism

website, my jaw just dropped:

 I have HHV6 reactivation and borderline low NK cells.(I also have CFIDS, ADHD,

Hashimoto's Thyroiditis, ANA antibodies, and limb numbness and weakness - which

is impoving with Imunovir.)

My autistic son has eczema, had recurrent ear infections as an infant/toddler.

 

This is no coincidence. We're on the cusp of something great here.

Bridget

 

From: Kristy Nardini <knardini@roadrunne r .com>

Subject: RE: Stop Calling It Autism! in Facebook

" ' ' " <jrodrig6605@ hotmail.com>

Cc: groups (DOT) com, " Goldberg, MD " <office@neuroimmune d r.com>

Date: Monday, March 29, 2010, 12:57 PM

 

Hi ,

I guess I need to better understand what, exactly, the " marketing message "

is. Are we going to shout from the rooftops that our children are sick with

some big, bad, ugly virus(es), but we don't have definitive proof and we

don't have a definitive cure? Because I'm not ready to do that with my son

and our family. I want to get the word out that our children do not have the

A-word, but we have to really think this through and make sure they won't be

stigmatized and ostracized because the medical terminology and treatment are

not 100% defined. I, for one, do not want to - cannot - risk that my son

will lose the a-word diagnosis just yet from the standpoint of the school

district and our regional center. I also do not want to run the risk that

what he has is likened to HIV/AIDS, and scare potential playmates and

prevent him from possibly being able to play team sports.

So, I hope you can help me to understand a marketing message that will work

for the mainstream, those who really don't care outside of their immediate

circles of concern (i.e. people like my own stubborn brother and sister),

those who can't and won't take the time to really understand the science

behind the explanation. In other words, the message really needs to be

softened, even " dummied-down " , for lack of a better term. Otherwise, I'm

really and truly sorry, but I cannot be a part of this - yet.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini. com

kristytazzini (DOT) com

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto:jrodrig6605 @ hotmail.com]

Sent: Monday, March 29, 2010 8:24 AM

knardini@roadrunner .com

Subject: Stop Calling It Autism! in Facebook

Hi Kristy,

As part of creating the Stop Calling It Autism! nonprofit organization we

already had in our plans many different marketing strategies to get people

to know about this organization.

Facebook, Twitter, groups are just a few ways that we can get

thousands of people to know about our great initiatives.

That's how we can make the noise and eventually a difference.

Take care,

Link to comment
Share on other sites

Guest guest

I love it! Great achronym.

Janelle

Stop Calling It Autism! in Facebook

Hi Kristy,

As part of creating the Stop Calling It Autism! nonprofit organization

we

already had in our plans many different marketing strategies to get

people

to know about this organization.

Facebook, Twitter, groups are just a few ways that we can get

thousands of people to know about our great initiatives.

That's how we can make the noise and eventually a difference.

Take care,

Link to comment
Share on other sites

Guest guest

I COMPLETELY agree.........a different name or even an acronym for Autism needs

to start surfacing in the mainstream media and public eye. We also need to push

for a new " face " for Autism (or whatever we end up calling it) because " Rainman "

is a common face people picture when they thing of Autism! Although

Hoffman did a wonderful job in the motion picture industry, he did a disservice

to the children and adults who have recovered and/or are recovering from the " A

word! " This website and Facebook are most definitely a good start.........

That's my two cents worth!

-

Sent on the Sprint® Now Network from my BlackBerry®

Stop Calling It Autism! in Facebook

Hi Kristy,

As part of creating the Stop Calling It Autism! nonprofit organization

we

already had in our plans many different marketing strategies to get

people

to know about this organization.

Facebook, Twitter, groups are just a few ways that we can get

thousands of people to know about our great initiatives.

That's how we can make the noise and eventually a difference.

Take care,

Link to comment
Share on other sites

Guest guest

There have been at least 2 children die here in Nova Scotia who had 'autism'

because they got lost or confused and died of exposure. I am sure there are

more throughout the world. Not to mention the kids that are abused or given

up because parents don't know what to do with them. This needs to be shown

to the media like on Oprah or Dr. Oz. I have sent Dr. G's office a message

asking why he hasn't gone public about this scientific explanation for a lot

our kids diagnosis but have not gotten a response. What has been keeping

this 'A' secret in the closet for this long? What can we do to change this

publicly and worldwide? A little girl here started a day called Purple Day

for epilepsy and now it is worldwide. Let's do the same thing for

'autism'!!!

Stop Calling It Autism! in Facebook

Hi Kristy,

As part of creating the Stop Calling It Autism! nonprofit organization

we

already had in our plans many different marketing strategies to get

people

to know about this organization.

Facebook, Twitter, groups are just a few ways that we can get

thousands of people to know about our great initiatives.

That's how we can make the noise and eventually a difference.

Take care,

Link to comment
Share on other sites

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