Re: Stop Calling It Autism! in Facebook

[Guest guest]

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

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto:jrodrig6605@...]

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

knardini@...

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,

[Guest guest]

Hi All,

I just joined the group, and as note here, my son has been a patient of Dr. G's

for almost two years now. We are making great progress but it seems all for not

if the larger community can not be informed. These children do not have the

A-word. I love, love this idea posted below, to start a group to get the word

out - I have thought about starting several websites to at least inform people

about the crisis that we all must cope with on a daily basis. It's just very

overwhelming so I am so pleased to hear that others feel that this needs be

done.

It's not without some risk that this would be undertaken... there is no

usefulness for me to carry on about how many people have given me the " your nuts

lady " look when I explained to them what is really happening to my son. There

are always going to be people that can not or simply do not want to be convinced

otherwise. I too have these people in my family, and I found that they do more

harm than good when it comes to helping get better and overcome this

illness.

Endeavor with courage share what you know is true based on the medical evidence

before you. Educate those who are willing to learn the truth, embrace those who

share the message of what is affecting our children. If this can prevent even

one child from becoming ill, then it has been worth it.

I hope I can join this group soon on facebook.

Best!

Corinne Meyer (aka' 's Mom)

>

> 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

> kristy@...

> Phone: 858.243.1929

> Fax: 858.724.1418

>

>

> P Please consider the environment before printing this email.

>

> From: [mailto:jrodrig6605@...]

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

> knardini@...

> 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,

>

>

>

>